What is the PUNS list in Illinois? Making the PUNS List Make Sense for Parents

If you live in Illinois and your student is in Special Education then you may have heard of PUNS at an IEP meeting or from fellow parents/family members.  With a funny name and less than stellar history, it probably left you either scratching your head or with a sour taste in your mouth.  

Well, this blog post is dedicated to helping it make sense to you- the parent or caregiver or family member!

This isn’t the only blog post on the topic, but it’s one that is written in less jargon-y terms because you (again, the parent/caregiver/family member) don’t live in the world of adult services or special education and getting your student what they need and deserve shouldn’t be confusing. 

Let’s start from the beginning!

What is PUNS?

Every state has a Home and Community Based Service (HCBS) Medicaid Waiver and here in Illinois, you can get that waiver by enrolling on the PUNS list.  Most people refer to the funding as PUNS funding, when it’s actually HCBS Medicaid Waiver funding.  

PUNS, which stands for Prioritization of Urgency for Needs of Services, is the waitlist.  Yes, we have a waitlist and sadly, most states do.  

Thankfully, Allison Stark, the former Director of the Illinois Division of Developmental Disabilities, made MAJOR strides in polishing up the PUNS name and reducing the time on the waitlist.

Key take-away: The PUNS list is how individuals with developmental and intellectual disabilities get funding they need to pay for services and supports. Click here for examples of intellectual and developmental disabilities.      

If this blog post gives you a better understanding of PUNS and you want even more detailed guidance with enrolling on the PUNS list, including common mistakes and frustrations (so you can learn from those before you), check out the Take Advantage Illinois benefit guide.  

Who Is Eligible?

The best way to know if your student is eligible for this funding is to call your local PUNS list enrollment office and find out.  Click HERE for an office locator and choose ‘Developmental Disabilities Services’ from the first drop down menu.  

Individuals can join the list at any age and being on the list prior to 18 years old is a wise choice.  I’ll explain why in the next section.

If you are curious what your student’s disability is, check their IEP for their primary and secondary eligibility (it’s usually listed on one of the first few pages).  If ‘Intellectual Disability’ is listed, then your student has an IQ of 70 or below.  This is key information and yes, that number matters.  If you want to find their IQ, look in their most recent testing reports and search for FSIQ.  If you can’t find that information, just reach out to their teacher or case manager, they can point you in the right direction. 

Again, this funding is for individuals with intellectual and developmental disabilities.  Click here for examples of intellectual and developmental disabilities.  

Why You Should Get Your Student On the PUNS List (How it Helps Them Long Term)

Once your student receives funding, they are set for life.  Meaning, once they are pulled off the waitlist, they will continue to receive funding for the length of their life.  Get on the waitlist, wait, and then boom- you’re in!

As of the time of this blog post, the current wait time on the waitlist is 60 months (or 5 years).  The 60 month wait time clock starts when the individual turns 18 years old and shifts to the Seeking List.  So, most individuals would receive funding around age 23 years old, assuming they got on the list before 18 years old and switched from Planning to Seeking on their 18th birthday (more on the two lists in the next section).  This may sound like a LONG time to wait (and it is), however the state is actively working to lower the wait time and honestly, they are doing a great job of exactly that!  

Thankfully, there are exceptions to the 60 month wait time and that is for crisis situations.  If you believe you or your student is in a crisis situation, it’s best to contact your local office to discuss their needs in detail to see if you qualify to apply for crisis funding.  

 The best sequence to follow when pursuing benefits in Illinois

How and When to Get On the PUNS List (and What ‘Services’ are Possible)

Since the state started funding both children and adults in 2022 (wahoo!), there is no ‘best’ time to get on the list- just get on it!  For just a few hours of work (maybe 3-6 hours or so) spread out over many years for a lifetime of funding, it’s worth it- trust me when I say don’t wait to get on the PUNS list! 

To get on the PUNS waitlist you need to call your local office.  If the student is over 18 years old and is their own guardian (meaning you don’t have formal guardianship), then they will need to sign off to let you as a caregiver/parent/family member assist in the process.  

Here is what you need when you make that first call:

• Student’s Social Security Number
• Medicaid Number (if they have Medicaid)
• Birthdate
• Disability
• Basic contact information

Call your local office and ask for a PUNS intake.  The first phone call should only take a few minutes, probably less than 5 minutes.  After they have you in the system, you will be contacted by a representative to complete the full enrollment.  

Here is what you need for the second meeting:

• Most recent IEP and re-evaluation paperwork
• Recent documentation/testing from doctors

The second meeting will take longer, probably between 30-75 minutes.  The representative will share a lot of information with you, ask questions, and answer your questions and it is best for the individual to attend this meeting, especially if they are over 18 years old.  

After everything has been shared you will need to sign and return paperwork to officially be on the waitlist.  

During that meeting the rep will ask you questions about what list you want your student to be on- Planning or Seeking.  

Planning means you don’t need services immediately, or in this case in the next 60 months.  Most individuals younger than 18 years are on the Planning list.  Seeking means your student will need services in the next year, or in this case 60 months.  Most individuals 18 years and older on the Seeking list.  

There are also two main ways to use the funding and the rep will ask you questions about this.  You don’t need to know which type of funding you want when you enroll on the PUNS list, but it’s helpful to know the options during your 60 month wait time.  

Option 1: Home Based Services is where funding is used to pay for services while the individual lives at home with family.  These services may include day programming, transportation, therapies, respite, etc (Scroll down to Section III for a full list).  If you are curious how much funding they will receive, for Children who are funded (under 18 yrs old) it is 2 x the current SSI amount.  Meaning, if SSI max is $900 per month for example, then Home Based Services would fund $1,800 per month.  For Adults who are funded (18 yrs and older), it is 3 x the current SSI or, for example, $2,700 a month.  

For individuals who are funded and over 18 years old and taking advantage of transition services through a local school district, they are funded at 2 x SSI until they graduate or accept their diploma, then their funding bumps up to 3 x SSI.  

Not to add to the confusion, but an individual does NOT need to receive SSI to receive Home Based Services, the state just uses that monthly payment amount to budget their funding.  

Option 2: 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.  Now, since CILA funding is a funding SOURCE and not a PLACE, this does not mean your student 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.  

Lastly, an individual can start out accessing Home Based Services for a few years and then transition to CILA funding when they are more ready to move into the community.  

Update Yearly!

Once your student is on the PUNS waitlist, their profile needs to be updated every year or they will be removed from the list.  

Thankfully, updating their profile should take 15 minutes or less.  So, set a yearly reminder in your personal calendar to update it and this can be done by phone through your local office.  

Why do you have to update it yearly?  If you don’t update it yearly then your student is removed from the waitlist because the state only wants individuals who are still interested in funding to be on the list.  If an individual moves out of the state, you don’t want their name on the waitlist, right?  Your local rep will also make notes to any changes in needs or desires and we know these things change over time, so a fresh update every year is to the benefit of the individual! 

What to Do During the 60 Month Wait

First, getting your student on the PUNS waitlist is a smart first move!  If you are looking for other options for services to fill the need in the meantime, check out What's Available to Help Disabled Young Adults in Illinois: Funding, Services, and Supports blog post.  Next steps might include applying for SSI and/or Medicaid.  If you've heard of SSI and want a little more guidance, check out the What You Need to Know When Applying for SSI blog post.  If your student is nearing graduation or exit and you want a handy checklist to see what other actionable steps to take, check out this FREE Exit checklist created for high school and transition-age students getting ready to leave special education services.  

So Your Student Was Pulled Off the Waitlist…Now What?

You got your student on the waitlist, you updated their profile every year, you waited, and suddenly a letter arrives in the mail (example of the letter) asking you to apply for services.  

Don’t throw this letter away!  It may sound like you already did that, but that letter is actually exactly what you’ve been waiting for!  It means your student is about to receive funding- YAY!

To help this make sense:

PUNS Intake > Enrollment on PUNS Waitlist > Wait…Wait…Wait > Apply for Services

When that letter comes it means you are starting your approximately 6 month ‘services set-up’ time before the first available funding.  Yes, you and your services coordinator will work together to make a plan for how your student will best benefit from their funding and you will have about 6 months to do this.  While you may want to get the funding immediately, this ‘planning time’ will reduce your need to rush to get services in place because you have the time to make thoughtful decisions and communicate with your coordinator about all the options.  And a few months of waiting will seem like nothing when you’ve been waiting for years and years for this funding!

Now, if you are still in the ‘waiting’ phase, there is something you can do to get an estimate of when your student will receive funding.

There is an automated email system that you can send an email to and you will get a response 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?’

You will get 1 of 2 automated reply emails.

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! Your son/daughter is on the list and has an estimated pull date.
• Keep updating the profile yearly and alert your local office if anything about your family situation changes.

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

• Your son/daughter is NOT on the PUNS list and, therefore, cannot be pulled for funding.
• Contact the local office to enroll (or re-enroll) your son/daughter on the PUNS list.

Click to access the complete PUNS benefit guide to get the funding, services, and supports your students and loved ones need and deserve. 

Other Funding Options

If you are looking for other funding options for your son/daughter while they wait on the PUNS list, you may want to look into SSI (Supplemental Security Income) and DHS Home Services (link to refer your son/daughter for services).  SSI is a federal program and provides monthly payments to individuals with disabilities.  DHS Home Services provides hours based on the need for individuals to receive the support they need in their home.  

It’s important to note that individuals can receive both SSI and HCBS Medicaid Waiver Funding (funding from being on the PUNS list), however individuals cannot receive both HCBS Medicaid Waiver Funding AND DHS Home Services hours.  The individual would have to choose one of the two.  

Did this help make PUNS make more sense to you?  I truly hope so!  I hope you feel more confident and informed about this funding option. 

If you are looking for more support with PUNS and other benefits, check out the Take Advantage IL benefit guide resource.  You can get a FREE sneak peek HERE! 

Do you have questions?  Feel free to reach out to me directly at [email protected] (and then check your Spam if you don’t see my reply email within a couple days) or click HERE for an office locator and choose ‘Developmental Disabilities Services’ from the first drop down menu.  

*This information is current as of the blog posting date of January 2023.  The author, Heather, is not a lawyer and is not affiliated with the Illinois Division of Developmental Disabilities.  She is only sharing her experience in working with families to understand the funding source and enroll on the waitlist.  

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