Glossary of Terms
This glossary explains the words and abbreviations you may see on this website or hear when talking with your ISC, service providers, or state agencies. The terms are listed in alphabetical order. If you come across a word that is not listed here, contact your ISC agency and they will be happy to explain it.
A
ABE (Application for Benefits Eligibility) ABE is the online system Illinois uses for applying for benefits like Medicaid, SNAP, and cash assistance. You can use it at abe.illinois.gov to apply, check the status of your application, or renew your benefits.
Active Treatment A program of training, therapy, and services designed to help a person with a developmental disability learn new skills, maintain the skills they have, and become as independent as possible. Active treatment is required for someone to be eligible for DD Waiver services.
Adaptive Equipment Devices or tools that help a person do everyday activities more easily. Examples include special utensils for eating, communication boards, modified computer keyboards, or grab bars in a bathroom.
Adult Day Service (ADS) A program where adults go during the day for activities, social time, learning, and supervision. It takes place in a community setting and is designed to support a person's well-being while giving caregivers time during the day.
Advocacy Speaking up for your own rights or for the rights of someone else. An advocate is a person who helps make sure someone's voice is heard and their rights are respected.
Assistive Technology Any tool, device, or piece of equipment that helps a person do things more independently. This can include anything from a wheelchair to a smartphone app that helps with daily schedules.
B
Bed Hold When a person temporarily leaves their residential placement (for example, for a hospital stay or a family visit), the provider may hold their bed so they can return to the same home. The state has rules about how long a bed can be held and when funding continues during the absence.
C
Caregiver A person who provides care and support to someone with a disability. A caregiver can be a family member, a friend, or a paid worker.
CILA (Community-Integrated Living Arrangement) A small home in a regular neighborhood where people with developmental disabilities live and receive support. Most CILAs have 1 to 8 people living together. Staff help with things like cooking, cleaning, personal care, and getting out into the community. CILAs are the most community-based and independence-focused residential option in Illinois. They are funded through the DD Medicaid Waiver.
CLF (Community Living Facility) A group home licensed by the state where people with developmental disabilities live and receive daily support. CLFs can have up to 16 residents. They provide 24-hour staff and focus on helping people build independence skills and participate in community life. CLFs are licensed by the Illinois Department of Public Health.
CMS (Centers for Medicare and Medicaid Services) The federal government agency that runs the Medicare and Medicaid programs. CMS sets the national rules that states must follow when providing Medicaid-funded services, including the HCBS settings rule.
Community Day Services Programs that provide learning, skill-building, and social activities for people with developmental disabilities during the day. This used to be called Developmental Training.
Consent Decree A legal agreement approved by a court. In the Illinois DD system, the most well-known consent decree is the Ligas Consent Decree, which requires the state to help people move from large institutions into smaller community homes. See also Ligas Consent Decree.
Crisis In the DD system, a crisis means the person with a disability is in immediate danger, is homeless or about to become homeless, or their caregiver can suddenly no longer provide care. Crisis situations are handled differently and may receive faster access to services. If you are in a crisis, call your ISC agency right away.
D
DD (Developmental Disability) A lifelong condition that begins before age 22 and causes significant challenges in three or more major areas of daily life, such as taking care of yourself, communicating, learning, getting around, making decisions, living on your own, or supporting yourself financially. Common developmental disabilities include intellectual disability, autism, cerebral palsy, and epilepsy.
DDD (Division of Developmental Disabilities) The part of the Illinois Department of Human Services that is in charge of services for people with developmental disabilities. DDD manages funding, sets policies, and oversees the PUNS system and waiver services.
DHS (Department of Human Services) The Illinois state agency that provides a wide range of social services, including services for people with developmental disabilities, mental health conditions, and other needs. DHS is the parent agency of the Division of Developmental Disabilities.
DSP (Direct Support Professional) A person who works directly with people with developmental disabilities to help them with daily activities, skill-building, personal care, and community involvement. DSPs are the staff members you interact with most in residential and day service settings.
E
Eligibility Meeting the requirements to receive certain services or benefits. For DD services in Illinois, eligibility is based on having a qualifying developmental disability, not just having a diagnosis. Your ISC agency determines DD eligibility.
Equip for Equality The independent legal advocacy organization designated by the governor to protect the rights of people with disabilities in Illinois. They can help with legal questions, complaints, and rights violations.
G
Guardian / Guardianship A legal arrangement where a court appoints a person (the guardian) to make some or all decisions for another person who is unable to make those decisions on their own. Guardianship can cover personal decisions, financial decisions, or both. Not every person with a developmental disability needs a guardian. There are less restrictive alternatives like power of attorney and supported decision-making.
H
HCBS (Home and Community-Based Services) Services funded by Medicaid that are provided in a person's home or in the community instead of in a large institution. HCBS includes services like CILAs, Home-Based Services, day programs, and therapy. HCBS services are provided through Medicaid Waiver programs.
HCBS Settings Rule A federal rule from CMS that says all services funded through HCBS Waivers must be provided in settings that are part of the community, give people privacy and independence, and respect their rights. This rule is the reason that CILAs and other community homes must look and feel like regular homes, not like institutions.
HFS (Department of Healthcare and Family Services) The Illinois state agency that runs the Medicaid program. HFS oversees the waiver programs that fund DD services, while DHS/DDD handles day-to-day operations.
Home-Based Services (HBS) Support services that come to the person in their own home or their family's home. These can include personal assistants, respite care, skill training, adaptive equipment, and other services. Home-Based Services are an alternative to moving into a residential setting.
Host Family / Host Home A type of CILA where a person with a developmental disability lives with a trained family in their home. The host family provides a family-like environment and personalized support. The host family is employed by a CILA agency.
Housing Navigation The process of helping a person with a disability find the right place to live. In Illinois, the Housing Navigation program connects people with resources, information, and support to explore their living options and make informed choices.
I
ICF/DD (Intermediate Care Facility for Developmental Disabilities) A residential facility that provides more intensive care and support for people with developmental disabilities. ICF/DDs can range from small homes to larger campus-style settings. They are funded directly by Medicaid (not through the Waiver) and include on-site medical and therapeutic staff. A person does not need to be on the PUNS list to access an ICF/DD.
IDD (Intellectual and Developmental Disabilities) A broad term that includes both intellectual disabilities and other developmental disabilities. You will see IDD used across this website and in many state and national resources.
IDPH (Illinois Department of Public Health) The state agency that licenses and inspects certain types of residential facilities, including Community Living Facilities (CLFs). IDPH sets health and safety standards for these settings.
IEP (Individualized Education Program) A written plan for a student with a disability who receives special education services in school. The IEP is developed by a team that includes the student's parents and teachers. IEPs are relevant to the DD system because they contain information about a person's abilities and needs that can be helpful during the eligibility and planning process.
Informed Choice The right of a person with a disability to receive clear, complete information about all of their options and to make their own decision about which services and living arrangements they want. Informed choice is a legal requirement in the Illinois DD system.
ISC (Independent Service Coordination) Agency The agency in your area that serves as your main point of contact for DD services. Your ISC helps you understand the system, determines eligibility, enrolls you in PUNS, connects you with providers, develops your service plan, and checks in on services after they start. Every county in Illinois has an ISC agency. To find yours, call 1-888-DD-PLANS or use the DHS Office Locator.
ISP (Individual Service Plan) A written plan that describes the services and supports a person will receive, their personal goals, and how progress will be measured. The ISP is developed by a team that includes the person with a disability, their family, the ISC coordinator, and the service provider. It is reviewed and updated at least once a year.
L
Level of Care A determination of how much support a person needs. To qualify for DD Waiver services, a person must be found to need the same level of care they would receive in an ICF/DD, even though they will receive services in the community instead.
Ligas Consent Decree A legal agreement from a federal court case (Ligas v. Maram) that requires the state of Illinois to help people with developmental disabilities move out of large institutions (like state-operated facilities and large ICF/DDs) and into smaller, community-based homes. The Ligas Consent Decree has been a major force in expanding community living options in Illinois.
M
MC/DD (Medically Complex for Developmental Disabilities) A specialized facility for people with developmental disabilities who also have significant medical needs that require regular nursing care and medical monitoring. MC/DD facilities have more medical staff than CILAs or CLFs.
Medicaid A government health insurance program that helps pay for medical care and services for people with low incomes or disabilities. In Illinois, Medicaid pays for most residential and support services for people with developmental disabilities. Most DD services require the person to be enrolled in Medicaid.
Medicaid Waiver A special arrangement that allows a state to use Medicaid money to pay for services in the community instead of only in institutions. Illinois has several waiver programs for people with developmental disabilities, including the Adults with Developmental Disabilities Waiver and the Children's Support Waiver. See also HCBS.
MFP (Money Follows the Person) A federal and state program that helps people move from institutions (like nursing homes or large ICF/DDs) into community-based homes. MFP provides extra support during the transition to make sure the move goes smoothly.
O
OIG (Office of Inspector General) The state office that investigates reports of abuse, neglect, and exploitation of people with disabilities who receive services funded by DHS. If you suspect that a person is being harmed or mistreated, you can report it to the OIG Hotline at 1-800-368-1463. Reports are confidential.
P
PAS (Pre-Admission Screening) A formal evaluation done to determine whether a person qualifies for DD Waiver services. The PAS checks whether the person needs the same level of care that would be provided in an ICF/DD. Your ISC agency conducts or arranges the PAS.
PAS/ISC Agency Many ISC agencies also perform PAS functions. When you see PAS/ISC, it means the agency handles both pre-admission screening and ongoing service coordination.
Person-Centered Planning An approach to planning services that puts the person with a disability at the center. It means the person's own goals, preferences, and choices drive the decisions — not what is easiest for the system or the provider. Person-centered planning is required under both Illinois and federal rules.
Personal Plan Another name for the Individual Service Plan (ISP). It is the written document that describes the person's goals, the services they will receive, and how those services will be delivered. See also ISP.
Personal Support A waiver service that provides help with daily living activities, teaches skills to increase independence, and offers assistance on a short-term basis when regular caregivers are unavailable.
Provider An organization or agency that is approved by the state to deliver services to people with developmental disabilities. Providers run CILAs, CLFs, day programs, and other services. They employ the DSPs who work directly with the people they serve.
PUNS (Prioritization of Urgency of Need for Services) The statewide waiting list that Illinois uses to track people who need DD Waiver services. When state funding becomes available, people are selected from PUNS based on their category (Seeking or Planning), how long they have been waiting, and other factors. To get on PUNS, contact your ISC agency. PUNS must be updated every year.
PUNS Categories PUNS has two categories. "Seeking Services" means the person currently needs or wants services now. "Planning for Services" means the person does not need services right now but may in the future. Only people in the Seeking category are selected when funding becomes available.
Q
QIDP (Qualified Intellectual Disability Professional) A person who has special training and credentials to work with people with intellectual and developmental disabilities. QIDPs often work at ISC agencies, and they help with assessments, service planning, and making sure people receive the right supports.
R
Respite Care Short-term care that gives a family caregiver a break. A trained worker comes in to provide support for the person with a disability while the caregiver rests, handles personal matters, or takes time for themselves. Respite can be provided at home or in another setting.
Remote Support The use of technology like video, audio, or monitoring devices to help a person be more independent in their home. Remote support can reduce the need for staff to be physically present at all times while still making sure the person is safe.
S
Self-Direction / Self-Directed Services A way of receiving services where the person with a disability (or their representative) has more control over how their services are delivered. This can include choosing their own workers, setting their own schedules, and managing a budget for their services.
SNAP (Supplemental Nutrition Assistance Program) A government program that helps people with low incomes buy food. SNAP is sometimes called food stamps. In Illinois, a person who is considering a CILA group home or host home must have both Medicaid and SNAP. You can apply for SNAP through ABE at abe.illinois.gov.
SODC (State-Operated Developmental Center) A large residential facility run by the state of Illinois for people with developmental disabilities. SODCs provide the most intensive level of care, including 24-hour nursing and behavioral support. Illinois has been moving people out of SODCs and into community settings as part of the Ligas Consent Decree.
SSI (Supplemental Security Income) A federal program that provides monthly cash payments to people with disabilities or older adults who have very low income and limited resources. Receiving SSI automatically qualifies a person for Medicaid in Illinois.
SSDI (Social Security Disability Insurance) A federal program that provides monthly payments to people who have worked and paid Social Security taxes but can no longer work because of a disability. SSDI is different from SSI because it is based on work history, not financial need.
Supported Decision-Making An alternative to guardianship where a person with a disability chooses trusted people to help them understand information and make their own decisions, while keeping their legal rights. This is a less restrictive option than guardianship and is recognized in Illinois law.
T
Transition The process of moving from one living situation or life stage to another. In the DD system, transition often refers to a young person aging out of school services (usually at age 22) and entering the adult service system, or a person moving from an institution to a community home.
Transition Planning Preparing ahead of time for a major change. For families, this often means starting the PUNS process early, securing Medicaid, learning about living options, and gathering important documents well before a move is needed.
W
Waiver See Medicaid Waiver.
Waiver Services The specific services that are paid for through a Medicaid Waiver program. In Illinois, DD Waiver services can include CILA residential support, Home-Based Services, personal support, community day services, therapies, adaptive equipment, assistive technology, respite, behavior intervention, and more. The services a person receives are described in their Individual Service Plan (ISP).
Key Phone Numbers and Websites
DD Helpline: 1-888-DD-PLANS (1-888-337-5267) | TTY: 1-866-376-8446 Call to find your ISC agency or ask general questions about DD services.
OIG Abuse Hotline: 1-800-368-1463 Call to report suspected abuse, neglect, or exploitation. Reports are confidential.
HFS Health Benefits Hotline: 1-800-226-0768 Call for questions about Medicaid coverage and benefits.
PUNS Status Email: DHS.DDD.PUNS@illinois.gov Email with the person's full name, birthdate, and last 4 digits of their Social Security number to check PUNS status.
Apply for Medicaid/SNAP: abe.illinois.gov
DHS Office Locator: dhs.state.il.us (select "Developmental Disabilities Services" and your county)