I recently asked parents who have a child with special needs what the most important piece of information was for parents who are just finding out that their child has a disability. The answer … get on the PUNS list.
A sense of humor is something every parent needs, especially if you have a child with special needs, but this PUNS list is no joke.
The Prioritization of Urgency of Need for Services (PUNS) list is a database created specifically to identify and track the number of people with developmental disabilities in Illinois. According to the Illinois Department of Human Services' Division of Developmental Disabilities, the PUNS list helps them identify and plan for the scope and need of future services. There are more than 20,000 people on the list statewide (about 2,000 of those people are from DuPage County).
Why is it so important to get on this list? First, by registering for the PUNS list, the state gets a concrete number to use for the planning and budgeting of services. Second, the state uses the list to assist those with the most critical and emergency of situations, for instance, the loss of a primary caregiver.
Though there is no guarantee that everyone on the list will receive services, Steve Boisse, associate executive director of PACT (DuPage County's independent service coordination (ISC) agency for the PUNS list), says that the list also is used to select individuals to receive services as state funding becomes available. Exactly when you might receive services is impossible to know but it's worth the wait because your child or adult child with developmental disabilities will always need assistance.
What types of services are available through the PUNS list? The services available are determined by your specific situation and can include in-home support, respite care, job coaching and living arrangements.
So how do you get on the PUNS list? Both the individual and their primary care giver and/or guardian must meet with a pre-admission screener from his or her area's ISC agency. The pre-admission screener will identify if you qualify for services. If you do, they will explain what services are available, identify the urgency of your need, explain the entire procedure and place you on the list.
Once on the list, you just wait. There isn't enough money in the state's budget to provide services for everyone. As funding does become available, the state selects names from the list. If you are one of the lucky names selected, your ISC agency will meet with you to start the screening process. Once your eligibility is confirmed, they will provide information on service providers, such as Ray Graham Association or Little Friends. They then work with you to put a comprehensive plan in place for the types of services to be used and stay with you as your service needs change through the years.
Due to a recent lawsuit settlement, about 180 individuals from DuPage County and close to 1,500 statewide were selected from the PUNS list and notified that they were going to be receiving services.
How do I find the Independent Service Coordination (ISC) agency in my area? PACT, Inc. is the ISC agency for DuPage County. You can learn more about the PUNS list at www.pactinc.net or by calling (630) 960-9700. If you are outside of DuPage County call the Division of Developmental Disabilities Hotline at (888) DD-PLANS and (866) 376-8446 (TTY), or visit www2.illinois.gov/dd/Pages/LocalAgency.aspx. Be sure to select Developmental Disabilities and include your county and ZIP code.
While getting on the PUNS list does not guarantee you will receive services, parents know that it is worth the wait. Though you have no idea when your name will be selected, a child with developmental disabilities will need some sort of services for the rest of the lives. So their advice … get on the PUNS list.
I invite you to share your thoughts on this topic as well as others at our blog at www.wdsra.com. Parents are encouraged to speak directly to other parents, share thoughts, offer personal stories, and educate each other on topics that affect them in their everyday life.
• Sherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at firstname.lastname@example.org. More information about WDSRA can be found at wdsra.com.