Illinois Department of Human Services Division of Developmental Disabilities
Accessing DDD Services
Agenda
- Legislative requirement for education
- Division of Developmental Disabilities Overview and Scope of Support
- Independent Service Coordination Agencies
- PUNs list process
- Eligibility for Developmental Disabilities waiver services.
- Additional Resources
Public Act 103-0504: School Requirements Regarding Outreach and Education on PUNs
- Requires that school districts to work in consultation with DHS and ISBE to ensure that all students with disabilities and the parents or guardians of those students are informed of the PUNS database, including where to register for the PUNS database and who they can contact for information about the database and registration process.
- Develop an online training program for at least one designated employee in every public school in this State to educate the designated employee(s) on the PUNS database and how to register students in the database. Schools will be required to post the names of the designated trained employees or employees on their public websites and include their names in the student handbook.
- During a student's annual IEP meeting, if a student has an intellectual or developmental disability, determine the student's PUNS database registration status based on the information provided by the student's parents/guardians or the student. If the student is not in the database, then the student and the student's parents or guardians should be referred to the schools designated employee who will provide the students with the necessary information the parents or guardians need to register the student in the PUNS database.
- The Act also requires the State Board of Education to provide each parent or guardian of a student with an IEP (through school districts) a copy of the latest version of the "Understanding PUNS: A Guide to the Prioritization for Urgency of Need for Services" each year at the student's annual IEP meeting.
Developmental Disabilities System Summary
Independent Service Coordination (ISC)
- Caseworkers and managers supporting individuals, families, and guardians (if applicable) through the lifetime of an individual with intellectual and developmental disabilities (I/DD)
PUNS Database
- Database to register children, young adults, and adults in order to get access to Waiver services.
Services
- Home and Community Based Medicaid Waiver Services: Adults with Developmental Disabilities, Children and Young Adults with Developmental Disabilities - Residential Waiver, Children and Young Adults with Developmental Disabilities - Support Waiver
- Grants: Respite (Group, In-Home, Voucher), Epilepsy, Latinx Outreach, Family Advocate Program
- Long-term Care: Private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) and State-Operated Developmental Centers (SODCs)
Children's Support Waiver
Provides services to children and young adults with intellectual or developmental disabilities ages 3 through 21 who live at home with their families and are at risk of placement in an Intermediate Care Facility for Individuals with Intellectual Disability (ICF/IID).
Services include:
- Personal Support (PSW)
- Behavior Intervention and Treatment
- Assistive Technology
- Adaptive Equipment
- Training and Counseling Services for Unpaid Caregivers
Children's Home-Based Support Services (HBS) budget is two times Supplemental Security Income (SSI) - flexible within the calendar year/no monthly cap.
More information about the Children's Support Waiver is here: https://hfs.illinois.gov/medicalclients/hcbs/support_cyadd.html
Children's Residential Waiver
Provides residential services to children and young adults with intellectual or developmental disabilities ages 3 through 21 who are at risk of placement in an ICF/IID.
Services include:
- Child Group Home
- Assistive Technology
- Adaptive Equipment
- Behavior Intervention and Treatment
More information about the Children's Residential Waiver is here: https://hfs.illinois.gov/medicalclients/hcbs/cyadd.html
Adults with Developmental Disabilities Waiver
Provides services and individualized supports to persons 18 years of age or older with a developmental disability who are at risk of placement in an ICF/IID.
Services include:
- Residential Habilitation (CILA/group home, CLF)
- Community Day Services (day program)
- Personal Support (PSW)
- Training and Counseling Services for Unpaid Caregivers
- Assistive Technology
- Behavior Intervention and Treatment
- Occupational Therapy, Physical Therapy, Speech Therapy
- Supported Employment
- 24-Hour Stabilization Services
Intermediate Care Facilities for Individuals with Developmental Disabilities
- Provides institutional services to persons 18 years of age or older with a developmental disability.
- ICF-IID services are an entitlement through Medicaid so if an individual qualified for these services, they can receive them without waiting on PUNs.
- ICF-IIDs can range from 4 people to 100s, depending on the provider and site.
- An individual can receive day services while living at an ICF-IID.
HCBS Waiver Services Review
The Division of Developmental Disabilities (DDD) is the Operating Agency for three Home and Community Based Services (HCBS) Medicaid Waivers.
- Children and Young Adults with Developmental Disabilities - Support Waiver (Children's Support Waiver or CSW)
- Children and Young Adults with Developmental Disabilities - Residential Waiver (Children's Residential Waiver or CRW)
- Adults with Developmental Disabilities Waiver (Adult Waiver or AW)
And the rate setter for Intermediate Care Facilities for Individuals with Developmental Disabilities
DDD currently serves over 25,000 adults and children in these three waivers and approximately 4,700 in ICF-IIDs.
Independent Service Coordination (ISC) Agencies
ISC agencies are the case management agencies and case managers/workers helping individuals, families, and guardians (if applicable) navigate the DDD system.
Seven (7) ISC agencies in eleven (11) regions are ready to help:
- Register individuals on the PUNS database (for access to waiver services)
- Connect individuals with other services (e.g., respite, information and resources, family support)
- After PUNS selection, help with the process to initiate services
- Support the Person-Centered Planning process (to ensure personal choice)
- Address transitions within and changes to waiver services
Independent Service Coordination Agencies
Effective July 1, 2023, there are 7 ISC agencies and 11 ISC regions
- Central Illinois Service Access (CISA)
- Community Alternatives Unlimited (CAU)
- Community Service Options (CSO)
- Prairieland Service Coordination Incorporated (PSCI)
- Service Incorporated (Service Inc)
- Southern Illinois Case Coordination Services (SICCS)
- Suburban Access (SA)
ISC Regions
- Service Inc. of Illinois (Areas A, E, F)
- Community Alternatives Unlimited (Area B)
- Community Service Options (Area C)
- Suburban Access, Inc. (Area D)
- Prairieland Service Coordination Inc. (Areas G, J, K)
- Central Illinois Service Access (Area I)
- Southern Illinois Case Coordination Services (Area L)
Finding an ISC Agency
There are two easy ways to determine an individual's local ISC Agency (based on their home address):
- Calling Division of Developmental Disabilities Hotline at 1-888-DD-PLANS and 1-866-376-8446 (TTY).
- When prompted by the recording, type in your Zip Code and it will connect to the local ISC Agency by the Zip Code.
- Accessing the DHS Office Locator (Also see: DHS Office Locator Help)
- Select Office Type: "Developmental Disability Services"
- Select home county
PUNS Database
- PUNS is a database to register individuals who want or need developmental disability services.
- As funding is available, individuals are selected from the PUNS database and able to initiate Waiver services (with the help of their ISC Agency).
- Individuals are selected:
- Through crisis (at risk of abuse, neglect or homelessness); or
- Based on time waiting in the Seeking Services category.
- More information about signing up for PUNS can be found here: https://www.dhs.state.il.us/page.aspx?item=41131
- There is a wait for waiver services, which as of FY25 is about 50 months.
PUNS Categories
- There are two (2) categories on the PUNS database:
- Planning for Services: Individuals who may need or desire DDD Waiver services in the future.
- Seeking Services: Individuals who currently need or desire DDD Waiver services.
- Current PUNS selections for services in the Adult Waiver are based on time waiting in the Seeking Services category.
- For the Adult Waiver, an individual begins accruing time on their 18th birthday or when they are registered on PUNS in Seeking Services, whichever occurs first.
PUNS Sign-Up
- Individuals, families, and guardians (if applicable) who want to register on the PUNS database should contact their ISC Agency.
- should work with their Independent Service Coordination (ISC) agency to register on the PUNS List.
- ISC agencies are the case management/case workers for I/DD system.
- PUNS enrollment should happen ahead of or on individual's 18th birthday to minimize wait time.
Individuals who want to be on PUNS should contact the Independent Services Coordination (ISC) agency in your area.
Find your ISC agency by:
- Accessing the DHS Office Locator
- Select Office Type: "Developmental Disability Services"
- Select home county
What Qualifies a Person for Developmental Disability Services?
- Intellectual Disability
- Evidence of manifestation prior to 22
- Reliance on records and historic documents that demonstrate low IQ (around 70).
- Developmental Disability (also called a related condition)
- It is attributable to a related condition like epilepsy, autism, traumatic brain injury, or cerebral palsy.
- Evidence that it was present before 22 years old.
- Results in functional limitations in 3 of 6 major life activities
- Self-care
- Language
- Learning
- Mobility
- Self-direction
- Capacity for independent living
* Please note that developmental disabilities are different than developmental delays.
What Documentation Assists in Qualifying for Services?
The following records should be provided to the ISC agency to demonstrate clinical eligibility:
- School Records (e.g., Individual Education Plan, teachers' observations)
- Intelligence tests administered prior to the age of 22 by a licensed clinical psychologist, or a certified school psychologist with credentials from the National Association of School Psychologist (NASP).
- Documentation of autism
- Diagnoses should be given by a clinical psychologist, psychiatrist, or developmental pediatrician through psychiatric evaluation.
- Documentation of a related condition
- Records from an occupation therapist, speech and language therapist, or physical therapist.
- There must be documentation/assessments of this occurring prior to the age of 22.
Review
If you think you might want services for people with intellectual and developmental disabilities now or in the future, reach out to the Independent Service Coordination (ISC) agency in your area to learn more and sign up for the PUNS list!
Sign up for Developmental Disabilities Communications: IDHS: IDHS: DDD Stakeholder Email List (state.il.us)