Glossary of Terms and Acronyms
The world of neuro-inclusive housing and I/DD service provision can be confusing. We have assembled a glossary of terms to help you learn more about the I/DD community.
Refers to a person living with Intellectual or Developmental Disabilities
Refers to individuals across the broad range of conditions and support needs associated with neurological differences, including those with and without intellectual and developmental disabilities. Source: A Place in the World
Neurodivergent is a nonmedical term that describes people whose brains develop or work differently for some reason. This means the person has different strengths and struggles from people whose brains develop or work more typically. While some people who are neurodivergent have medical conditions, it also happens to people where a medical condition or diagnosis hasn’t been identified. Source: Cleveland Clinic
There are many different notions about and definitions for what it means to be neuro-inclusive. The IHC prefers to define NI as an environment that welcomes ways of thinking and processing that may be different from what people think is the norm. Neuro-inclusive housing means a residential setting that enables all people to be an integral part of their neighborhood and greate community.
The word for people who aren’t neurodivergent is “neurotypical.” That means their strengths and challenges aren't affected by any kind of difference that changes how their brains work. Source: Cleveland Clinic
Terms Related to Support Needs
Source: A Place in the World
The individual has access to a DSP at all times, but the DSP may be shared with others; they are not the only person receiving support from the DSP the majority of the time.
Agency-based rotational staffing
An individual who needs LTSS selects an agency that provides LTSS to recruit, hire, train, schedule and fire support staff for them.
Daily medical support
The individual needs the attention of a medically trained/certified provider to safely complete daily routine care, such as assistance with eating, breathing (including durable medical equipment), etc.
Direct Support Professional (DSP)
Someone who works directly with people with intellectual or developmental disabilities to assist the people they work with to become independent and integrated into their community.
The individual needs a DSP to check in with them every few days or as requested; the individual is self-sufficient the majority of the time.
High behavioral support
The individual needs specialized support(s) to mediate severe challenging behavior, significant adaptive skill deficits and medical/ behavioral issues to participate safely in home and community life. Examples of severe challenging behavior include aggression, self- injury, pica, elopement and property destruction.
An individual with LTSS needs lives in the home of their LTSS provider. As a provider-controlled setting, the LTSS provider (host) can ask the individual to move. This is also referred to as adult foster care or the family teaching model , .
Intermediate Care Facilities for Individuals with Intellectual Disability (ICF/ID)
This optional Medicaid benefit provides comprehensive, individualized health care and rehabilitation services to individuals in need of active treatment services. ICF/IDs are provider-controlled settings that provide both housing and LTSS to residents .
The individual needs a DSP to support them with a few tasks each day but can be self-sufficient for most of the day.
Long-Term Services and Supports (LTSS)
Refers to individualized support for activities of daily living, such as meal preparation, hygiene, recreation and more. Individuals and their families can fund LTSS delivery with Medicaid or private pay; access and eligibility varies by state. Individuals and their families can match their support needs and funding options for LTSS with the LTSS delivery model that best suits their needs.
Due to symptoms of dementia or Alzheimer’s disease, the individual needs a safe environment, with extra structure and support to navigate the day.
The individual needs a DSP periodically throughout each day but can be self-sufficient for several hours at a time.
Services and supports are provided by person(s) such as family, friends, neighbors and/or community members for no financial payment. Natural supports may be reciprocal, where supports, services and/or non-financial benefits (such as cookies and/or friendship) are exchanged instead of money.
No support needs
Not all neurodiverse individuals need long-term services and supports for activities of daily living.
Not all neurodiverse individuals need LTSS for activities of daily living and therefore do not need LTSS delivery.
The individual needs the full attention and in-person support of at least one DSP at all times.
A person who lives on the same property (but not in the same home) as an individual with LTSS needs, who can offer LTSS on a scheduled or on-call basis. This is also referred to as a resident assistant.
When possible, an individual may have their LTSS needs met via remote service, using technologies such as video conferencing, smart-home devices and other enabling technology.
Residential transition program
An individual who needs LTSS may participate in a one- to five-year residential program that teaches greater autonomy in activities of daily living and life skills for maintaining relationships and employment. The goal of the program is for the individual to rely less on LTSS in the future. It is also referred to as a post-secondary transitional program.
An individual who needs LTSS is given a budget to spend on their LTSS based on an assessment of their support needs. They are responsible for recruiting, hiring, training, scheduling and firing support staff. Some states allow family members to be hired as support staff.
An individual with LTSS needs invites a person or family member(s) to live in their home to provide LTSS. Because private homes are consumer-controlled settings, the individual can ask their LTSS provider to move .
Terms Related to Funding Options for
Long-Term Services and Supports
Source: A Place in the World
Properties where the housing provider is not inherently connected to residents’ LTSS provider(s). Each resident chooses their LTSS provider(s). Residents may change their service provider and stay in their home. For example, a private home (apartment, single-family home, etc.) is a consumer-controlled setting where one or more residents can choose their LTSS provider and change providers if needed. In some consumer-controlled settings such as a planned community for individuals with disabilities, the housing provider may also be an LTSS provider; but residents still have the option of choosing or changing to a different LTSS provider while staying in the same home. Some residents of the property may not receive LTSS because they have no support needs.
In some cases, a property may include both consumer-controlled and provider-controlled settings. For example, a provider-controlled group home within a planned community would make the planned community a hybrid setting.
Medicaid Home and Community-Based Services (HCBS) waiver
These Medicaid-funded waivers finance recipients’ LTSS in non- institutional settings. HCBS waivers are administered by state governments. Each state offers different HCBS waivers (by various names) and state-specific plans that cover different LTSS delivery models . Check which HCBS waivers are available by state here.
Medicaid Intermediate Care Facilities for Individuals with Intellectual Disability (ICF/ID)
This optional Medicaid benefit provides comprehensive, individualized health care and rehabilitation services to individuals in need of active treatment services. ICF/IDs are provider-controlled settings that provide both housing and LTSS to residents. ICF/ID waivers are administered by state governments .
The federal health insurance program for people 65 or older, people with disabilities and people with end-stage renal disease. Different parts of Medicare cover the costs of hospital stays (including skilled nursing facilities, hospice care and some home health care); doctors’ services, outpatient care, medical supplies and preventive services; and prescription drugs .
Not all neurodiverse individuals need LTSS for activities of daily living and therefore do not need funding to pay for LTSS.
The individual has private financial resources from their personal income, family support, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Achieving a Better Life Experience (ABLE) account and/or Special Needs Trust (SNT) to finance their LTSS needs –.
Properties where the housing provider is both property manager and LTSS provider. Residents cannot change their LTSS provider in a provider-controlled setting without moving to a different home. Examples include host homes, most group homes and ICF/IDs.