Health Condition and Disability-Specific Resources
Little Friends provides programs and supports to empower children and adults with autism and developmental disabilities and their families to live, learn, work and thrive in their communities. Little Friends serves individuals and families throughout ten counties and more than 50 school districts across Illinois. Programs include:
- Schools, educational and vocational training programs
- Respite family services
- Community-based residential living
- The Center for Autism
- Inklude Studio
- The Fun Club
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
Love is Respect – Teen Dating and Healthy Relationships for Young Adults
Love is Respect, a project of the National Domestic Violence Hotline, offers information, support and advocacy to young people between the ages of 13 and 26 who have questions or concerns about their romantic relationships. Free, confidential services are available anytime via:
- Live chat
- Call (866) 331-9474 or TTY (800) 787-3224
- Text ‘LOVEIS’ to 22522
Services for the deaf and hard of hearing are also available:
- Videophone (855) 812-1001
- Instant messenger at DeafHotline
- Email nationdeafhotline@adwas.org
Love is Respect also provides a Parent Discussion Guide on Youth Healthy Relationships.
Margaret Hackett Family Program
Congenital anomalies of the central nervous system (CNS) are birth defects of the physical structure of the brain or spinal cord that occur during fetal intrauterine growth such as spina bifida, hydrocephalus and other conditions. The Margaret Hackett Family Program (MHFP) at the University of Chicago provides individuals and families help with diagnosing, understanding, caring for and addressing the challenges of living with CNS congenital anomalies. MHFP also provides research and research grants.
The Margaret Hacker Family Program also offers:
- A monthly, virtual “Connect Group” for individuals and families affected by CNS anomalies
- In-person quarterly socials
- In-person events twice a year featuring food, giveaways, fun activities and resources
- Help with finding resources and medical care
The Mended Hearts program is a national peer-support program for patients who have cardiovascular disease, their caregivers and their families. Mended Hearts provides support and education, bringing awareness to issues that those living with heart disease face, and advocating to improve quality of life across the lifespan.
It includes Mended Little Hearts, which provides support to families of children with congenital heart defects (CHDs) or other heart conditions, and Young Mended Hearts, which supports young adults ages 18 to 55 who have heart disease, including CHDs.
Mended Little Hearts and St. Jude Medical partnered to create this digital resource guide for parents and caregivers of children with congenital heart disease or defects (CHD).
Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have.
Go to The Mended Hearts, Inc. HeartGuides page and scroll down to see the Mended Little HeartGuide in English and Spanish.
Mental Health and Developmental Disabilities Training Modules
The Mental Health and Developmental Disabilities (MHDD) National Training Center has developed free, easy-to-read online learning modules for people with intellectual and developmental disabilities, their family members and their supporters to learn more about mental health. They also have modules designed for mental health professionals and clinicians.
These training modules are available at www.mhddcenter.org/learn-now.
The training topics include anxiety, bipolar disorders, depression, post-traumatic stress disorder, preparing for a mental health assessment, supported decision-making and what to expect in a mental health therapy session.
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.
Model Systems Knowledge Translation Center (MSKTC)
The Model Systems Knowledge Translation Center (MSKTC) provides free, easy to understand resources for people living with traumatic brain (TBI), spinal cord (SCI) and burn injuries and their supporters. The research-based resources aim to improve rehabilitation outcomes and quality of life for people living with SCI, TBI, and burn injuries. MSKTC resources are available in a variety of formats including printable PDF documents, videos and slideshows.
The MSKTC website features a wide range user-friendly resources divided by topic:
MPHI Center for Precision Public Health
The MPHI Center for Precision Public Health provides educational opportunities for clinicians, public health professionals, community organizations and families. The center focuses on improving the health and well-being of all through research, supporting data-driven initiatives, facilitating community-led program development, and providing technical assistance.
MPHI also provides free CME and CE Modules for families and professionals. Topics include:
- Improving care for developmental disabilities and dysmorphic features
- Patient-centered newborn screening communication
- Decoding genetic test reports for frontline clinicians