To access our service system, you can contact a local coordination agency in your area. These agencies are the “front door” to Illinois’ state-funded service system. The Local Coordination Agency will talk with you about the service system and discuss your needs.
Click here to locate your local PAS Agency
PUNS – Prioritization of Unmet Need for Services – Victory
Two years ago, advocates celebrated a historic victory when a bill was passed by the
Illinois General Assembly creating a cross-disability database or waiting list for services
for people with disabilities in Illinois.
Now, for the first time, disability advocates can anticipate having real and accurate
information about the needs, met and unmet, of people with disabilities in Illinois.
Last November, the State began officially gathering that information for persons with
developmental disabilities using a survey tool called the Prioritization of Urgency of
Need for Service (PUNS).
The name is an unfortunate acronym because, for us, PUNS is no joke.
PUNS will allow us to have accurate information to use as advocates as we talk to our
PUNS will be the tool the state uses as it decides who will receive services on an
PUNS will be the tool the state uses as new programs and services are being developed.
The PUNS Survey is the result of a year and a half of planning and design by Celia
Feinstein of Temple University in Pennsylvania and the Illinois Division of
Developmental Disabilities. Ms. Feinstein was brought to Illinois by the Illinois Council
on Developmental Disabilities after developing a similar survey in Pennsylvania. Based
on that survey, Pennsylvania increased funding for disability services by $835 million!
History tells us that this is an important effort!
THE PUNS SURVEY IS A FAMILY SUPPORT ISSUE.
As with any new project, there has been plenty of confusion. Many people perceive the
PUNS survey as being ONLY for people anticipating the need for residential services.
Others perceive the survey as being only for adults.
The survey is for ANYONE or the family of anyone anticipating the need for services in
the next five years. The person with a disability must have a developmental disability as
defined by the Division of Developmental Disabilities.
For families of minor children the need may mean respite or after school care. It may
mean access to therapies or equipment or home modifications. Do not think about
available services or specific programs; think about what your need is. Think about what
you haven’t been able to get, either because it doesn’t exist or because it is not available to
If you do not anticipate having a need in the next five years, the PAS agent is not
supposed to complete the survey! So be thoughtful about your needs! This is your
Families that include members with disabilities have a hard time acknowledging their
needs. Our need to be self-sufficient and competent is vital. Our need to present ourselves
to the world as “normal” is powerful. All we want to do is lead a typical life. We bury our
THIS IS NOT THE TIME TO BE PROUD. NOW IS THE TIME FOR YOU TO STEP
UP AND BE COUNTED.
This is the time to think critically about what our loved one with a disability needs to be
successful, either in your home or his home in the community.
Your willingness to complete the survey will allow us to advocate for family support
programs! Currently just over 6,700 individuals have completed the survey.
Demographics lead us to believe that as many as 14,000 could eventually be included in
THIS IS HOW TO DO IT.
Call your local Pre-Admission Screening (PAS) Agency (ISC Agency). They must fill
out the survey for you with your input. You can identify your PAS agency on the web at
http://www.dhs.state.il.us/OfficeLocator/ or through Illinois Life Span on the web,
www.illinoislifespan.org, or by phone, 800-588-7002. We have also included a list in this
Your PAS agency representative will make an appointment to meet with you, probably in
your home, or possibly in their office.
The process of filling out the form involves a face-to-face conversation between the PAS
agent and the person with a disability, a family member or a guardian, and any other
person the individual with a disability wishes to include. The survey represents the
combined perception of all these parties.
The PUNS survey must be updated on an annual basis.
At twelve months, a notice will be issued to all parties of the need to update the form. If
not updated, an additional warning will be submitted of the intent to close the PUNS
Some people report being told that they don’t qualify or that they’re not eligible. Others
report being told that if they don’t have a need within five years that they don’t need to
complete the PUNS. Everybody with a developmental disability who anticipates a need within the next five years should complete the PUNS form. Think critically about your
needs. Even if it is “just” respite or “just” after school supports, or “just” transportation.
If you are not satisfied with the survey, feel it has been filled out inadequately or if you
feel you have been inaccurately turned down in your request to fill out the survey, you
should contact your DHS Network Facilitator at 217-524-2521 or 312-814-2735. Please
also contact Mike Kaminsky at the Illinois Life Span Project at 800-588-7002. We are
trying to understand how well things are going and Mike is tracking questions and
Also, please remember that inclusion in the database does not assume eligibility for
services or guarantee the receipt of services.
WHAT DOES THE FORM LOOK LIKE?
The PUNS form first categorizes need by three levels of urgency.
Emergency: the individual or caregiver needs support immediately;
Critical: the individual or caregiver needs support within one year;
Planning: the individual or caregiver needs support within 1-5 years or their caregiver is
Then it asks you to identify supports and services you or your loved one with a disability
need or will need in the future. Even if you are doing well now, you need to think about
what you need to continue doing well! Our families should not have to become
dysfunctional to access help!
Think carefully about the choices being presented. Most will be obvious.
The PUNS Survey is a new and exciting opportunity for Illinois advocates. But it is
frustrating. As with any new project we are learning. Some question if the PUNS survey
is asking the questions we want to answer. Do we really have the opportunity to share our
needs? Others wonder if we shouldn’t be asking for information for more than five years
out. Maybe. Probably. As this process goes forward we will have opportunities to ask for
changes to the survey.
But, we must step up and use it to understand it! Please take this opportunity to contact
your PAS/ISC Agency and ask for an appointment today!