Resource and Links for Families
PUNS - Prioritization of Unmet Need for Services
Three years ago, the Illinois General Assembly created a cross-disability database or waiting list for services for people with disabilities in Illinois. The State now collects information from families using a survey tool called the Prioritization of Urgency of Need for Service (PUNS). The PUNS is for ANYONE or the family of anyone anticipating the need for services in the next five years (which is just about all persons with autism).
But: The PUNS database still only contains 376 people with a primary diagnosis of autism, and 612 with a secondary diagnosis. (DHS data: 2/16/06) Yet, we know that there are at least 8,393 children in public schools with autism, so why aren't more people listed on the PUNS? Because we haven't gotten our children and adults with autism listed.
We need to get on that database now. PUNS data will be the tool the state uses as it decides who will receive services on an individual basis, and it will be used to determine what new programs and services the state will develop.
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 you. 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 chance! 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 10,000 individuals have completed the survey. Demographics lead us to believe that more than 20,000 people should eventually be included in the database.
How to get listed on the PUNS?
Call your local Pre-Admission Screening (PAS) Agency (or "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 see the list at the bottom of this document.
Your PAS agency representative will make an appointment to meet with you, either in your home or in their office. We are also working with PAS agencies to set up convenient "PUNS registration events" on weekends or at night. 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.
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. Remember: autism is a condition that must be counted, so if your loved one has autism and another condition(s), list all of them. 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.
The PUNS survey must be updated on an annual basis. After twelve months, a notice should 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 record.
Also, please remember that inclusion in the database does not assume eligibility for services or guarantee the receipt of services. But, if you are not on the PUNS, you are guaranteed NOT to receive state services. So get on there today.
Just what are Pre-Admission Screening agencies and what do they do?
Pre-Admission Screening (PAS) is really a service that is provided by Independent Service Coordination (ISC) Agencies. Eighteen such agencies are located around the state for easy access. You do not get to choose which agency you want to use. You must use the one in your geographic area. Pre-Admission Screening is a process through which eligibility for certain state-funded services is determined. Independent Service Coordination Agencies can help connect individuals with disabilities to services for which they have been determined eligible. They can also connect you to other helpful services. Independent Service Coordination Agencies are the backbone of the service system as they provide choices and options to people and their families as they access the maze of services.
Service Coordination Agencies (aka "PAS agencies")
Find which is yours by typing in your county and "Developmental Disabilities" here: http://www.dhs.state.il.us/OfficeLocator
|Options & Advocacy of McHenry Country||815-477-4720|
|Pact, Inc, Lombard||800-637-7181|
|Suburban Access, Homewood||708-799-9190|
|Service, Inc., Joliet||815-741-0800|
|Community Service Options, Chicago||773-884-1000|
|Community Alternatives Unlimited, Chicago||773-867-4000|
|Access Services Northern IL, Loves Park||815-282-8824|
|Community Service Options, Moline||309-278-0022|
|Western IL Service Coordination, Macomb||309-833-1621|
|Central IL Service Access, Pekin||309-527-7202|
|Livingston Co. 708 Board, Pontiac||815-844-7708|
|Champaign Co. Regional Planning, Urbana||217-328-3313|
|D.D. Service Metro East, Belleville||618-236-7957|
|West Central Service Coordination, Pittsfield||217-285-5227|
|Prairieland Service Coordination, Decatur||217-864-0494|
|Great River Service Coordination, Jacksonville||217-243-2330|
|Southern IL Case Coordination, Centralia||800-828-7422|
Call them TODAY and get listed.
Who knows, you may even find that you are eligible for existing services. Even if you are not, the State needs to know that we are out there and in need of help.
Adapted from Family Support Network