The Champaign County Down Syndrome Network (DSN) provides information and support to families who have members with Down syndrome in Champaign County and east-central Illinois.

DSN serves new parents, professionals and the general public to promote Down syndrome awareness and acceptance year-round.

Lincoln Land Down Syndrome Society (LLDSS) provides a support network for families residing in and around Sangamon County. LLDSS programs and events promote awareness, inclusion and education of people with Down syndrome.

LLDSS activities include monthly meetings, social gatherings and recreational opportunities.

For questions, please use the online form to contact LLDSS.

The Central Illinois Down Syndrome Organization (CIDSO) offers support, events and educational resources for families in McLean County who have loved ones with Down syndrome.

For questions, please visit CIDSO’s Contact Us page.

The eHomeCare program is a free online training program that aims to deliver comprehensive, evidence-based information on the care of children requiring complex medical care at home. The program consists of eight distinct courses aimed at enhancing the knowledge, skills, and confidence of home care providers, including:

• Caring for children with a tracheostomy with or without a ventilator
• Central line care
• Dialysis in home
• Infection control
• Setting boundaries in the home
• Skin care
• Range of motion
• Daily care activities for children

The courses aim to bridge knowledge gaps and enhance caregivers’ confidence and competence in managing both routine and emergency situations. The training is for family members, caregivers, professionals and anyone interested in learning more.

If you have trouble enrolling in the course or need help, please email help@icep.wisc.edu.

Medicare is federal health insurance run by the Social Security Administration. This fact sheet from the Division of Specialized Care for Children (DSCC) explains the program’s eligibility and how to enroll.

It also explains the Medicare Savings Program, the Extra Help Program and Medicare coverage and costs.

• Medicare Fact Sheet in English
• Medicare Fact Sheet in Spanish

Many children experience the death of a close family member or friend at some point during their childhood.  The American Academy of Pediatrics’ website HealthyChildren.org provides information for parents about childhood grief, ways to help your child, and where to find support.

The information includes:

• Signs your child may need more help
• Important information about tweens
• Resources for more information

The loss of a child is never easy. The Funeral Service Foundation’s free guide “When a Child Dies: Planning Acts of Love & Legacy” offers guidance, support and inspiration to families saying goodbye. Topics include:

• The funeral planning process
• Talking with children about death
• Ideas for planning a meaningful tribute
• Carrying forward and dealing with your grief

For questions, please visit the Funeral Service Foundation’s Contact Us page.

The Funeral Service Foundation’s “Youth and Funerals” page provides free ebooks, printed booklets and webinars to help families discuss death and funerals with youth. The information can help families understand the role funerals play in the lives of children and youth, and how including youth in remembering loved ones can be healing and empowering.

Materials in English and Spanish include:

• Age-appropriate language and advice on discussing death and funerals with youth
• Suggestions for preparing and involving youth in remembering or memorializing a loved one

For questions or more information, please contact the Funeral Service Foundation at (877) 402-5900.

In this video, nurses from Ann and Robert H. Lurie Children’s Hospital of Chicago describe and demonstrate emergency management for pediatric patients with tracheostomy (trach) tubes. The video covers:

• Prevention and assessment of emergency situations
• How to manage a mucous plug
• How to replace a trach tube that has become dislodged
• What to do if the trach tube is difficult to replace
• When to provide manual ventilation using bag to trach tube, bag and mask to mouth, and mouth to mouth

The Pediatric Palliative Care Coalition’s (PPCC) Sibling Grief and Bereavement Toolkit aims to address the needs and concerns of children and teens who have experienced the death of their sibling with medical complexities. The toolkit provides information to help adults understand how children and teens may process their grief and how to provide comfort to help them heal.

The toolkit can help with:

• The many feelings siblings might experience
• Therapeutic activities families can do together
• More resources for encouraging and guiding conversations