National Down Syndrome Society
The National Down Syndrome Society (NDSS) aims to empower individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities and shifting public perceptions.
Its resources include information on Down syndrome across the lifespan as well as in the areas of aging, caregiving, education, employment, health and more.
DSCC’s Using Supplemental Security Income (SSI) to Get Ready for Your Future Tip Sheet
The Division of Specialized Care for Children (DSCC) created this tip sheet to help youth with special healthcare needs and their families learn more about Supplemental Security Income (SSI). SSI can help pay for food, clothing and housing needs. It also helps you keep your medical benefits.
The tip sheet includes:
- Steps for applying for SSI
- Work incentives
- Where to look for more information
DSCC’s Using Supplemental Security Income (SSI) to Get Ready for Your Future Tip Sheet in English
DSCC’s Using Supplemental Security Income (SSI) to Get Ready for Your Future Tip Sheet in Spanish
DSCC’s Self-Care Skills Assessment for Parents/Caregivers of Young Adults With Intellectual/Developmental Disabilities
DSCC’s Self-Care Assessment for Parents/Caregivers of Youth with Intellectual/Development Disabilities is designed to help caregivers of young adults (ages 18 to 25) assess the young adult’s ability to care for their own health. The assessment will help provide information about what your young adult already knows about their health and areas where you/they need to learn more.
If a young adult is able to fill out this information independently, they should complete the young adult version of this form instead.
Self-Care Skills Assessment for Parents/Caregivers in English
Self-Care Skills Assessment for Parents/Caregivers in Spanish
DSCC’s Insurance for Teens Tip Sheet
This tip sheet from the Division of Specialized Care for Children (DSCC) explains how teens with special healthcare needs can learn about their insurance benefits, how to keep track of insurance information and explore adult insurance options.
Living Independently Now Center Incorporated of Southern Illinois (LINC Inc.)
The Living Independently Now Center of Southern Illinois Incorporated (LINC Inc.) provides support and resources for individuals with disabilities and their families in St. Clair, Monroe and Randolph counties. LINC Inc. has offices in Swansea and Red Bud. Its resources and programs include:
- Deaf and hard-of-hearing services
- Assistive technology equipment loan program
- Community reintegration
- Computer literacy
- Mental health resources
- Peer-to-peer counseling and support groups
- Respite care program for active duty Air Force and Navy families
iCanConnect
iCanConnect is a national communication equipment distribution program for people with significant combined hearing and vision loss. The program helps eligible individuals who are deaf-blind stay connected to friends, family and the world by providing equipment specific to each person’s needs.
The iCanConnect website provides information about each local program and application requirements. The local program works with iCanConnect participants to provide an individualized assessment and help with equipment needs.
Brightpoint (formerly Children’s Home & Aid)
Brightpoint provides a wide range of programs statewide to help families and their children navigate challenges such as poverty, trauma and systemic barriers to equity. Brightpoint focuses on prevention and helping families before problems become life-altering crises. Its programs include:
- Early childhood care and education
- Parenting support and family services
- Foster care
- Workforce development and youth programs
- Mental health and wellness
Brightpoint started as Children’s Home & Aid and has offices in Bloomington, Carpentersville, Englewood, Palatine and Schaumburg.
DuPage County Health Dental Clinic
The Dental Health Program at the DuPage County Health Department provides access to dental services and oral health education for low-income residents of DuPage County. Dental treatment is not free. Patients must meet income guidelines and/or have active Medicaid. The clinic charges low-cost fees.
To make an appointment, call (630) 682-7400 between 8 a.m. and 4:30 p.m. For questions, email dentalhealth@dupagehealth.org.
The Painted Turtle Overnight Camp for Children with Serious Medical Conditions
The Painted Turtle is a year-round, overnight camp in California for children ages 7 to 17 with a variety of serious medical conditions, their siblings and family members. Condition-specific camp sessions and family weekends (for children ages 6 to 17) aim to encourage children to try new things and develop lasting friendships. Campers and their families attend free of charge.
The camp has a full-time medical staff, a health center and a physician onsite at all times. The Painted Turtle provides camper eligibility guidelines and medical criteria to help determine the best session for your child and family.
Mental Health for Children With Intellectual and Developmental Disabilities
Navigate Life Texas, a project to inform and empower parents of children with disabilities or special healthcare needs, has a Mental Health for Children With Intellectual and Developmental Disabilities page. This page provides ideas on how to talk to your healthcare provider and the people working with your child if you think your child might be having mental health symptoms.