Terms & FAQs

Terms & labels can be intimidating & sometimes carry negative connotations. However, below are terms & explanations that can be helpful in understanding & navigating the caregiving role…& eventually in getting appropriate support services & care for each child.

FAQS

What does the term complex medical child mean?

Complex medical children (CMC) have multiple major medical conditions, multiple specialists providing care involving different organ systems & functional limitations with high health care needs. CMC is synonymous with complex chronic & medically complex children.

What does medically fragile mean?

The term medically fragile refers to continual needs for skilled services that support basic life functions necessary for survival. Often, but not always, complex medical children intersect with this category.

What does special needs mean?

Often ‘special needs’ is in reference to educational settings. Popular use of the term covers a broad base of conditions–from cognitive disabilities to critical illnesses. It refers to individuals who require assistance for disabilities that may be medical, mental, or psychological.

What is the Katie Beckett Program?

The Katie Beckett Program is a special eligibility process that allows certain children with long-term disabilities, mental illness, or complex medical needs, living at home with their families, to obtain Medicaid.

Check under your state’s department of health services for specifics: www.dhs.your state.gov/kbp

Language matters–but how do we use words that help & don’t hurt?

• The import of placing terms after the child cannot be stressed enough. For example, not “a special needs child” but, “a child with special needs”. This way a child isn’t defined by the phrase or objectified but, is humanized. Another example of phrasing, not “a blind child”, but “a child who is blind”.
• Avoid using the word “normal” to refer to kids who do not have a disability in contrast to kids with disabilities. Try “non-disabled” instead.
  For example: not “Cody did as well on the exam as the normal students.”
  Instead use “Cody did well on the exam.”
• Avoid using terms that define a child’s illness or disability as a limitation.
  For example: not “confined to a wheelchair” or “wheelchair bound”
  Instead use “wheelchair user” or “uses a wheelchair”
• Terms and words such as “victim”, “poor” or “sufferer” should not be used to refer to children who have a disability or disease as it implies powerlessness & pity. Instead show empathy but, talk in ways that empower & include.

What does inclusion mean?

Technically & leagally, inclusion means the practice or policy of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities/illnesses.

But, inclusion is much more than practice or policy–it’s a belief system that every child has strengths to build on, interests to share & experiences to respect.

What is a neuropsychology evaluation?

The phrase “neuropsychological evaluation” may sound a little intimidating. But it’s really just a series of questions and activities. The way kids complete these tasks helps a neuropsychologist see how their brains work & measures things like attention, memory, language & thinking skills.

Neuropsychological testing can pinpoint problem areas and help figure out why kids are struggling in school. It also looks at strengths and recommends ways to help kids thrive at home, school & in the community.

What is a 504 Plan, IEP/ISP? 

A 504 Plan is for students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education & services. A document, the 504 Plan, is created & annually updated to outline the student’s specific accessibility requirements.

An Individualized Education Program (IEP) or Individualized Service Plan (ISP) outlines goals and ensures that the child experiences success in school. There are 13 categories of special education as defined by the Individuals with Disabilities Education Act (IDEA).

IEPs are tailored to each child’s unique needs, which are identified during an evaluation process. Each plan is designed with consideration of how the student’s disability or behavioral concern affects learning, and includes accommodations & modifications to facilitate the outlined academic and behavior goals. 

What’s the difference between accommodation & modification?

Accommodations are basically physical or environmental changes,
varying teaching strategies & may include things like, extended time, preferential seating, sign language interpreter, reduced assignments, homebound tutor, etc.

Modifications involve deliberate intellectual lowering in the level of materials presented. For example, presentation of curriculum is modified using a specialized curriculum written at a lower level
of understanding. And materials are adapted, texts are simplified by modifying the content areas—simplifying vocabulary, etc.

What’s the difference between a high school completion certificate & a college bound diploma?

A high school certificate shows a student has completed high school, but didn’t meet all the requirements for graduation.

A high school diploma indicates a student has met all the requirements for graduation.

Go to the site, Understood, for more information.