The University of Louisville School of Medicine website provides a wide range of PKU (Phenylketonuria) resources to support families.

The Family PKU Booklet provides information for families after a positive newborn screening. Using illustrations and clear language, the booklet helps make complicated, scientific information easier to understand.

The site also includes:

• Caregiver and school preparation tips
• Nutrient trackers
• Downloadable PHE and protein log templates
• Recipes and low protein food suppliers
• PKU community resources

Ann and Robert H. Lurie Children’s Hospital’s Tracheostomy Care at Home page aims to help parents learn how to take care of their child’s tracheostomy (trach).  Topics include:

• The Tracheostomy
• Tracheostomy Skin Care
• How to Suction the Tracheostomy
• How to Change a Tracheostomy Tube
• Emergency Care

Please note: This information is for informational purposes only and is not intended to substitute in any way for medical education, training, treatment, advice or diagnosis by a healthcare professional.

The Pediatric Palliative Care Coalition (PPCC) offers a Caring Conversations Toolkit to help determine when and how to start a conversation about hospice or palliative care. Separate toolkits targeting the needs of families and providers are available.

Each toolkit offers a series of questions to consider in deciding if it is time to start a conversation about hospice or palliative care for a child with serious illness and how to navigate the discussion.

SAM’s Sweet Heart Memorial Foundation is dedicated to helping Illinois families with children with complex medical diagnoses.

SAM’s Sweet Heart provides financial assistance to Boone and Winnebago county families with children under the age of 18 who have a medical condition requiring lifelong treatment. Local families may apply for a grant during open application periods.

The Illinois Chapter of the Association of Education of Young Children (ILAEYC or Illinois AEYC) works to enrich the quality of care and education of the young child by:

• Increasing communication among parents, caregivers and professionals involved in the care and education of young children
• Providing in-service training for the early childhood community
• Hosting opportunities for community learning

ILAEYC has chapters and volunteers throughout the state.

Metropolitan Family Services provides a variety of services throughout Chicago, DuPage County, Evanston, Skokie and the southwest suburbs to help families learn, earn, heal and thrive. Metropolitan Family Services programs include:

• Early learning
• Afterschool
• Job readiness
• Counseling and mental health
• Legal assistance

Nurse-Family Partnership of Sangamon County, provided by Southern Illinois University School of Medicine, serves first-time parents in Sangamon County to help improve pregnancy outcomes, child health and development, and economic self-sufficiency.

Nurse-Family Partnership (NFP) creates positive outcomes through nurse home visitors who work with families from pregnancy until the child’s 2nd birthday. Individuals may qualify for NFP of Sangamon County if they are less than 28 weeks pregnant and have financial, social or health risk factors such as:

• Loss of household income or an inability to pay for living expenses
• Chronic health condition(s) or mental health concerns
• Domestic violence
• Transportation or access to care difficulties

No proof of income is required for enrollment. Referrals can be made by providers, nurses, community services and individuals by calling (217) 545-0175, emailing  at siunfp@siumed.edu or using IRIS (integrated referral and intake system) or Touch Works “SIU Nurse-Family Partnership”

Equip for Equality’s Project LEAP (Launching Equity in Access to Preschool) helps children with disabilities from birth to 6 get Early Intervention and early childhood special education services so that they’re ready to succeed in school. Project LEAP can help your child:

• Move from Early Intervention to early childhood education
• Receive the tests needed for special education services
• Access behavior supports and assistive technology

Project LEAP can also go to your child’s Individual Education Program (IEP) meetings, mediation and due process hearings in select cases.

For more information or to schedule a time to talk, please contact Equip for Equality at EFEProjectLEAP@equipforequality.org or call the Equip for Equality Special Education hotline at 1-866-KIDS-046 or (866) 543-7046.  You can also complete an online intake form at www.equipforequality.org/get-legal-help-from-efe/.

Medicaid and the Children’s Health Insurance Program (CHIP) cover dental services, including check-ups, x-rays, fluoride treatments, dental sealants, fillings and more. Use this Dentist Locator to find a dentist in your community who sees children and accepts Medicaid and CHIP.

If you don’t have coverage, learn more about free or low-cost health insurance available in your area at InsureKidsNow.gov or call 1-877-KIDS-NOW/(877) 543-7669.

Children with special needs may need extra time or support when seeing a dentist. This tip sheet provides resources and the steps needed to balance your child’s needs with the dentist’s experience.

You can view the  Dental Care for Children with Special Needs tip sheet from the InsureKidsNow.gov website.