Illinois PUNS List Benefit: How to Apply for Waiver Funding

What You Should Know about PUNS…

Learn About:

1. What PUNS Funding Is

2. Steps to Enrolling on the IL PUNS List

3. Typical Mistakes & Frustrations

4. Frequently Asked Questions

5. Contact Information

6.  Free Download (Coming Soon!) 

What is it?

The waiting list to receive $$$ to pay for a disabled person’s day-to-day needs long term.   PUNS, which stands for Prioritization of Urgency of Need for Services,  is the name of the waitlist to access IL’s Home and Community Based Services Medicaid waiver funding.  The PUNS database is the link to access the Developmental Disability Waiver Services (DD) offered by Medicaid and is overseen by the Illinois Department of Human Services.

Who would access it?  

An individual with an intellectual disability, developmental disability,  hearing, visual, or physical impairment.  Examples- Autism, down syndrome, cognitive impairment, etc. 

Who is eligible?

Individuals who live in the state of Illinois, have a Social Security Number, and an IQ 70↓.  While individuals can enroll at any age, the individual should enroll by their 18th birthday to make the most of their time on the list. 

What support does it offer?

Money from the waiver can be used to pay for housing, personal care aides, transportation, therapies, respite, recreational programming, and other needs.  Once funded, an individual will continue to receive funding until death. 

Priority

Getting on the PUNS waitlist should be priority #1 because wait time matters.   It may take the longest time to see a ‘result’, but it could also provide funding for the longest time!  

Walking Through the Process

Step 1- Gather Materials

There are a few things to gather before taking the first step towards getting the individual on the PUNS list, including basic contact information (address, name, birthdate, etc.), the disability, and Social Security Number.  If the individual has Medicaid, locate that card as well.

Knowing the FSIQ (Full Scale Intellectual Quotient) of the individual is very helpful, especially if the individual’s disability impacts people differently, like autism.  If the individual receives Special Education services, then they may have been tested by a school psychologist  as part of a 3 year IEP re-evaluation.  Reviewing past reports from the school psychologist may help you locate the FSIQ.  Look for intelligence tests in the report, such as WISC, WIAT, WAIS, Stanford-Binet, among others.  There will likely be a few different numbers from the results of these tests, so skim until you find the FSIQ.  If the score is 70 or ↓ then the individual is 2 standard deviations from 100 and is considered to have an intellectual disability.  

If you do not see any IQ testing from the school, then consider reaching out to the individual’s case manager or teacher (if they are still in school) to inquire.  An individual’s IQ tends not to change over time, so if the student was tested many years ago, you simply might not be referencing the right report.   There are a variety of other reasons why an individual might not have been given an IQ test or is considered ‘untestable.’  However, if the student is nearing their 18th birthday or receiving transition services, having a FSIQ score is necessary when applying for adult services and IQ testing can be requested by school staff or family as part of the student’s 3-year re-evaluation.    

Step 2- Intake Call

Once the basic information is gathered it is time to make the first of two phone calls.  Call your local disability support office (contact information for your local office can be found HERE) during business hours and request a ‘PUNS Intake.’  This phone call will likely take less than 5 minutes and may be called a PAS or pre-admission screening as the agent is checking to see if the individual meets the basic eligibility requirements.    

Local disability support offices have ISC agents on staff.  An ISC agent, or Independent Service Coordination agency, is the person who will be your main contact to enroll on the PUNS waitlist.  They will be an important person for you to remember, so add their name to your phone contacts! 

After the Intake the information will be handed to an ISC agent to set-up a ‘PUNS Enrollment’ meeting.  More about this in Step 3.

Step 3-Enrollment Meeting

The Enrollment meeting is the longest meeting (between 30-75 minutes), but most important as this is where the completion of a puns form is done.  This meeting may take place via video call, in-person, or via phone (this may vary by office).  It’s helpful to have the individual’s most recent IEP (if they are still in school) as a reference as the related services they receive (like social work, speech, etc.) will be helpful to share.  

ISC agents typically refer to funding as ‘waiver funding’ and not ‘PUNS funding’ because PUNS is just the name of the waitlist.   The term ‘PUNS funding’ is frequently used to describe the funding received after being pulled from the PUNS list, however the term ‘HCBS Medicaid Waiver’ is more accurate but less familiar to people who are newer to adult services.  

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The ISC agent will likely start by sharing information about the PUNS list in the form of 3 statements.  Below is the gist of those 3 statements:

• Enrolling on the PUNS list does not guarantee services.  Once the individual is pulled from the list, they will go through eligibility to determine if services are appropriate or not. 
• There are living arrangements available to individuals other than community based.  The PUNS Medicaid Waiver is for community-based services only.  Individuals can pursue an ICF (Immediate Care Facility) placement and should work with their ISC agent to access that option.  (More about ICF’s on the next page)
• Initial PUNS Enrollment meetings should be held face-to-face and subsequent yearly updates can be conducted over the phone.  

The ISC agent will then share the 3 ways to use PUNS waiver funding once the individual is funded.  The two most popular are described below.  

Option 1- Home Based Services

Home Based Services is where funding is used to pay for services while the individual lives at home with family.  These available services may include - adaptive equipment, adult day care, assistive technology, behavior counseling, behavior intervention and treatment, Community Day Services, emergency home response, fiscal employer/agent (required), home accessibility modification, Individual Service and Support Advocacy (required), non-medical transportation, nursing, occupational therapy, out of home respite, personal support worker, physical therapy, psychotherapy, regular work/sheltered employment, self-directed assistance (personal care provider), speech therapy, support services team, supported employment, temporary assistance, training and counseling services for unpaid caregivers, vehicle modifications, etc. (Scroll down to Section III of the Illinois DHS website for a full list offered within the home services program).  This home-based supports option does allow family members to be paid to provide care to the individual in their own home.  

Option 2- Community Integrated Living Arrangements

CILA funding stands for Community Integrated Living Arrangement, and this is for individuals who want to live in their community as opposed to living at home with family.  The term ‘CILA’ usually refers to a group home, where a few individuals live in a home with 24/7 staff.  The difference is that CILA funding is a funding SOURCE and not a PLACE.  Therefore, choosing a CILA does not mean the individual would live in a group home.  CILA funding can be used to fund a variety of different community living arrangements and your rep can share more information about options.  CILA funds are appropriate for people who need 24/7 care for independent living and for those who need periodic check-in type support, called Intermittent CILA, of about 15 hours per week. 

Option 3- Intermediate Care Facilities (ICF)

This is typically for individuals who have intense medical needs that require continuous monitoring. 

The ISC agent will not need to know which option the individual would prefer at the Enrollment meeting, but it is helpful to know the different ways the funds can be used once an individual is funded.  

The ISC agent will then share about the Planning and Seeking lists.  The PUNS waitlist has 2 PUNS categories, Planning and Seeking.  If the individual is younger than 18yrs old, then they typically are on the Planning list.  The Planning list is for individuals who do not need funding in the next year (or 60 months, as this is the current wait time for funding).  The Seeking list is usually for individuals 18 years and older because they are typically seeking funding within the next year (or 60 months).  

Then, the ISC agent will start to ask questions about the individual’s current needs, this is where having the most recent IEP will be helpful.  The ISC agent may ask about the Related Services the individual receives, such as speech language therapy, social work, occupational therapy, physical therapy, vision or hearing services, or orientation and mobility services, as well as how they get to and from school (school bus, walk, drive, drop off, public transportation, etc.).  The ISC agent will likely inquire about vocational experiences both in school and out and long-term goals and needs for employment, as well as assistive technology and nursing needs.  

During that time, you and the individual will share a vision for what they want their life to look like in the future.  Does this include living at home or in the community?  What recreational programs or activities are of interest?  Are transportation supports needed?  This can start off rather vague and be updated throughout the years on the waitlist. 

You can find a full list of typical questions below. 

Information to gather before the Enrollment meeting:

• What is the individual’s IQ, disability (primary and secondary, if applicable), and age they were diagnosed or found eligible? 
• Has the individual ever had a seizure?
• Has the individual accessed a psychiatric stay at a hospital?
• Does the individual receive any Related Services/Therapies, such as speech language therapy, social work, occupational therapy, physical therapy, vision or hearing services, or orientation and mobility services?
• Does or has the individual received any vocational training in school and/or in the community?
• What are the long-term goals and needs for employment?  Are they a client of DRS?
• Does the individual use any assistive technology?
• Does the individual need any nursing or medical equipment or supplies?
• Does the individual use a respite provider?
• Has the family home or vehicle been modified to meet the individual’s needs?
• Is the individual accessing any recreational activities outside of school?
• Where does the individual want to live in the future, with family or in the community?
• What day-to-day tasks does the individual need support with?  (Ex- personal care, safety, financial, scheduling day, shopping, cooking, eating, health needs, behavior, mobility, communication, taking medication, etc.)
• How is the individual currently being transported around their community? 
• How does the individual want to spend their days as an adult?
• What transportation services will be needed in the future?  (Ex- door-to-door service, local public transportation, reduced fare/free ride, Rideshare, accessible transportation, etc.)
• When is the individual’s anticipated date of graduation?  If planning to access transition services, use the 22nd birthdate year as the graduation year. 
• Does the individual need any other supports?  (Ex- obtaining a job or volunteer position, community outings, day programming, home modifications, additional person to provide support in the home, respite, personal care, etc.)
• An odd piece of information that will likely be gathered by the ISC is the birthdates of the parents or primary family member caregivers as aging parents can impact care for the individual with a disability.  

Step 4- Sign & Send Back

One of the last steps in the Enrollment meeting is whether you want to give the ISC agent permission to add the individual to the waitlist that day.  There isn’t likely a reason that adding them that day would be a bad thing.  However, know that the final last step is to wait for the papers to arrive via snail mail or email, print, sign, and return to the ISC agent.  This is the final step to confirm they are on the PUNS statewide database.  It would be a waste of time to complete the Intake and Enrollment and not return the signed papers. 

Step 5- Ongoing Updates

The Enrollment profile needs to be updated every year or it will become inactive.  If the profile is inactive the individual will not be eligible to receive funding, so keep it active!  The ISC agent will reach out to the primary contact via phone, email, and likely a letter about 2-3 months before the 1-year mark.  This serves as the formal reminder(s) for the individual to update their profile.  

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A yearly update can be completed via phone and will likely take less than 15 minutes.   Among the questions the ISC agent might inquire about would be new guardianship paperwork, new behavior or medical concerns, family changes, plans for the future changes, SSI and/or Medicaid approval, and the like.  The ISC agent will update the profile and send for new signatures.  Be sure to send back the signed papers as that is the confirmation the individual remains on the PUNS list and accrues wait time.  

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If the individual enrolled on the PUNS list when they were younger than 18 yrs. old, they will need to be formally moved from the Planning list to the Seeking list.  This can be requested by phone to the ISC agent.  Call and request the individual be moved to the Seeking list on or after their 18th birthday.  Remember, this is when the 60 month wait timeclock officially starts, so being timely matters! 

If a crisis occurs with the individual, family, or primary caregiver the ISC agent should be notified.  Those who are authorized to give and receive information about the individual (because there is a signed form on file) can share an update with the ISC agent.  The ISC agents will review the crisis and determine if it meets the criteria to move forward with applying for emergency funding.

Step 6- Email Estimate

There is an automated system that estimates when an individual will receive waiver funding (often referred to as PUNS funding) and this can be used during the time between the Enrollment Meeting and receiving the Award Letter.   Send an email (as outlined below) and an automated response will be received in about 24 hours. 

Email- [email protected] 

Subject- Pulled from PUNS list

Body of the email- Full name, birthdate, ‘When will I be pulled for funding?’

The individual will receive 1 of 2 automated replies.

Reply 1:

Reply- “We have received your request for information regarding the PUNS list. Based on the current list, we anticipate your selection after the (Month) of 20##.”

Great! The individual is on the list and has an estimated pull date. Keep updating the profile yearly and alert your local office if anything about the family situation changes.

Reply 2:

Reply- “We do not find a person by this name in the database.”

The individual is NOT on the PUNS list and, therefore, cannot be pulled for funding.  Contact the local office to enroll (or re-enroll) the individual on the PUNS list.

This email can be sent about every 6 months and is a great way to help with future planning.  

Step 7- Award Letter

Award letters are typically sent in July of each year.  The Award letter (click HERE to see a sample of the letter) is sent via snail mail, but ISC agents may also reach out to the individual and main contacts regarding funding.  

The Award Letter asks the individual to apply for services.  Remember that by being on the waitlist the individual has Enrolled on the waitlist, they didn’t Apply for services.  Once the individual receives the Award letter, they will Apply for the services they want and need, and eligibility will be confirmed.  There is a 6-month set-up time before funding begins.  This may seem odd, but it gives the agent, individual, and family time to coordinate everything to start taking advantage of the funding when it becomes available, which is typically the January of the following year.  Setting up services, such as day programming, job coaching, recreational activities, therapy, transportation, etc. all take time, and this 6-month set-up time is to do just that.  

FREE Help! 

There is no cost to enrolling on the PUNS list.   Time spent enrolling through an ISC agent is completely free.   See below for contact information.

Contact Information

ISC Agent

An ISC (Independent Service Coordinator) Agent works at regional Dept of Human Services offices.  Each office has a different name, like Service, Inc., Suburban Access, Prairieland Service Coordination Inc., etc., but they all have ISC agents on staff to help individuals enroll on the PUNS waitlist.   

Website: https://www.dhs.state.il.us/page.aspx?module=12&officetype=3 

How to Search: Click ‘Developmental Disability Services’ and select the county from the drop-down list

Need to reach out via email? 

Email information below was gathered from office websites and by calling local ISC agency offices.  

Central Illinois Service Access (CISA) 

Serves- Peoria, McLean, Logan, Tazewell, Woodford, Mason, Menard, Sangamon and Christian Counties

Executive Director: Mary McGlauchlen- [email protected] or [email protected] 

Community Access Unlimited 

Serves- City of Chicago, Lake County, North Shore suburbs, and Northwest suburbs [email protected] 

Community Services Office, Inc. 
Serves- West and South neighborhoods of Chicago 

[email protected]  

Prairieland Service Coordination Inc. (Area G)

Serves- Fulton, Henderson, Henry, Knox, McDonough, Mercer, Peoria, Rock Island, Stark and Warren Counties

[email protected] or [email protected] or [email protected] or [email protected] or [email protected] 

Prairieland Service Coordination Inc. (Area J) 

Serves- Champaign, Clark, Coles, Cumberland, DeWitt, Douglas, Edgar, Effingham, Ford, Iroquois, Macon, Moultrie, Piatt, Shelby and Vermillion Counties

[email protected] or [email protected] or [email protected] or [email protected] or [email protected] 

Prairieland Service Coordination Inc. (Area K) 

Serves- Madison and St Clair Counties

[email protected] or [email protected] or [email protected] or [email protected] 

Service Inc. of Illinois (Area A-Rockford Office)

Serves- Jo Daviess, Stephenson, Winnebago, Boone, McHenry, Carroll, Ogle, DeKalb, Whiteside, Marshall, Putnam, LaSalle, Bureau, and Lee Counties

[email protected]

Service Inc. of Illinois (Area E- Lombard Office)

Serves- Kane, Kendall, and DuPage Counties

[email protected] 

Service Inc. of Illinois (Area F- Joliet Office)

Serves- Will, Grundy, Livingston, and Kankakee Counties

[email protected] 

Southern Illinois Case Coordination Services (SICCS)

Serves- Alexander, Bond, Clay, Clinton, Crawford, Edwards, Fayette, Franklin, Gallatin, Hamilton, Hardin, Jackson, Jasper, Jefferson, Johnson, Lawrence, Marion, Massac, Monroe, Perry, Pope, Pulaski, Randolph, Richland, Saline, Union, Wabash, Washington, Wayne, White and Williamson Counties

[email protected] (CEO)

Suburban Access, Inc. (Homewood & Westchester Office) 

No email provided, encouraged to continue calling.

To Note

Each local office and ISC agent’s PUNS Intake information and Enrollment meeting conversation may vary slightly.

This post was developed to provide transparency to the process for a new PUNS list enrollee, thus making it more approachable.   The goal of this post is to increase the understanding of the application process for young adults and their families so they can proactively seek the support they are entitled to.   

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