The Pediatric Palliative Care Coalition (PPCC) and Courageous Parents Network (CPN) provide resources to help parents, caregivers and medical professionals focus on giving special attention to siblings who are living and sharing their lives with a brother or sister with medical complexities.

Their Sibling Support Toolkit provides videos, activities, podcasts, a guided pathway and other resources to support parents and siblings as they navigate the ups, downs, setbacks and joys that make up their day-to-day lives.

Southern Illinois Case Coordination Services (SICCS) provides this Developmental Disability Transition Resources guide to provide an overview of the person-first services and supports for individuals with developmental disabilities and their families.

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.

Available services include PUNS (Prioritization for Urgency of Need for Services). PUNS is the name for the list of the people in Illinois with developmental disabilities who want or need services but do not yet have funding.

The Arc of Illinois’ Family Advocate Program (FAP) provides information and outreach to adults with intellectual and developmental disabilities and their families who are selected from the PUNS (Prioritization of Urgency of Need for Services) or notified in advance of a future PUNS selection.

LFAP’s resources include a “Finding Your Way” flowchart roadmap that outlines the steps from PUNS enrollment to developmental disability waiver services.

Entrepreneurship and self-employment can be valuable and viable options for people with disabilities looking to enter the job market on their own terms. RespectAbility’s Born for Business toolkit provides an inventory of existing materials, advice and guides for job seekers with disabilities who are ready to become self-employed, launch a new enterprise or develop their entrepreneurial skills.

This toolkit was developed along with the Born For Business docuseries that focuses on the talents, innovations and impact of entrepreneurs with varying disabilities.

Respite is a service providing a temporary break between the family caregiver and the care recipient. Illinois offers a variety of respite services for eligible families and individuals.

Illinois Life Span (ILS), a program of The Arc of Illinois, provides fact sheets, information and a listing of respite services/providers currently funded by the Illinois Department of Human Services, Division of Developmental Disabilities. The current listing may be found on their website.

The Illinois Network of Child Care Resource and Referral Agencies (INCCRRA) is a statewide organization that partners with the state’s 16 local Child Care Resources and Referral (CCR&R) agencies. It is a recognized leader, catalyst and resource for making high-quality, affordable early care and education and school-age care options available for children and families in Illinois.

CCR&R’s connect and coordinate programs and services for young children and their families. CCR&R’s manage the application and information for families to receive child care assistance, allowing them to work and/or go to school while their children have access to quality early care and education.

Visit www.inccrra.org/about/sdasearch to find your local CCR&R.

The Illinois Telecommunications Access Corporation (ITAC) is a not-for-profit that issues equipment to provide telephone access to Illinois residents who are hard of hearing, late deafened, deaf-blind or speech-disabled.

ITAC provides both the Illinois Relay phone service and an equipment program, which are both required by state law. Its equipment is designed specifically for people who are having difficulty hearing on the standard phone system. Information is also available in Spanish.

The Ray Graham Association provides individuals with disabilities and their families in DuPage County and the surrounding area with recreational, residential, family support, employment and life skills services.

The Ray Graham Association website also includes links to advocacy and legislative resources. The association’s goal is to empower people to:

• Reach their potential by providing access to therapeutic programs, recreation and family support resources.
• Grow their future through neighborhood living, life-skills training and employment opportunities.
• Achieve their goals by pursuing personalized plans with measurable actions and results.

The Nest Postpartum is a nonprofit that serves families with a child in the neonatal intensive care unit (NICU) at Carle Hospital in Champaign.

It provides services such as transportation, lodging, prepared meals, care coordinator check-ins and links to other community support programs for families staying in the NICU.

For help or questions, please email info@thenestpostpartum.org.

The Arc@School‘s online advocacy curriculum provides the basic information that parents, educators and other advocates need to support students and families in navigating the special education system, including understanding the Individuals with Disabilities Education Act (IDEA) and Early Intervention services, Individualized Education Programs (IEPs), Section 504 and more.

The program offers information on the supports, services and rights for students with disabilities.

The Arc@School program is also available in Spanish.