- What is intellectual disability and what causes it?
- What are the symptoms of intellectual disability?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- Where can I get information on how to provide for my child when I am no longer able to provide care?
- How are autism and intellectual disability related?
- Does the term developmental delay mean the same thing as intellectual disability?
- What is the life expectancy of my child with intellectual disability?
- Genetic conditions; examples are Down syndrome, fragile X syndrome, and phenylketonuria (PKU)
- Problems during pregnancy
- Problems at birth
- Health problems such as brain infections or severe systemic infection
- Toxic exposures
Where can I get information on how to provide for my child when I am no longer able to provide care?
A national, community-based organization advocating for people with intellectual and developmental disabilities and their families.
Mutual Respect, Advocacy, and Understanding of Utah (MRAU)
Provides advocacy, education, newsletters, and conferences related to ID; helps families with guardianship information.
Center for Parent Information and Resources
A large resource library related to children with disabilities. Parent Centers in every state provide training to parents of children with disabilities.
Developmental Disabilities Information (ddhealthinfo.org)
Information and resources about developmental disabilities for clinicians that includes clinical practice considerations for related conditions and information about related issues (communication, dental, mental health, CAM); University of California San Diego, School of Medicine.
Intellectual Disability (MedlinePlus)
Overview of the causes, symptoms, and treatment of ID; from the National Library of Medicine and National Institutes of Health.
Developmental Disabilities (MedlinePlus)
Reliable links to information about developmental disabilities and ID; from the National Library of Medicine and National Institutes of Health.
Learn the Signs. Act Early (CDC)
A CDC program to address the importance of early identification of developmental delay and disability. Early intervention (before school age) can have a significant impact on a child’s ability to learn new skills, as well as reduce the need for costly interventions over time; Centers for Disease Control and Prevention.
EP Magazine (Exceptional Parent)
A monthly publication that provides practical advice, emotional support, and up-to-date educational information for people with disabilities.
Financing Your Child's Healthcare (MHP)
Information, services, and resources that may help offset some of the medical costs of caring for your child with special health care needs; Medical Home Portal.
A Family Handbook on Future Planning (ARC)
Helps families develop a plan that provides personal, financial, and legal protections for their children with cognitive, intellectual, or developmental disabilities after the parents either die or can no longer provide care; The Arc.
Intellectual Disability Fact Sheet (English & Spanish) (CDC)
One-page fact sheet for families who may be concerned that their child has intellectual disability; Centers for Disease Control and Prevention.
Care Notebook (MHP)
The care notebook helps keep track of appointments, resources, labs, medications, tests, care providers, and more. Download the complete notebook, compile in your own binder, or download separate forms; Medical Home Portal.
Forms for Education
Descriptions and links to forms that can be adapted for states and Local Education Authorities (LEAs), usually school districts, or charter schools. Topics include evaluation and service recommendations, special dietary needs, medication administration, and authorization to release information; Medical Home Portal.
Sleep History Questionnaire ( 20 KB)
Sleep log and 1-page questionnaire about sleep routines and behavior.
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|Author:||Lynne M Kerr, MD, PhD - 3/2012|
|Reviewing Author:||Meghan Candee, MD - 4/2015|
|Compiled and edited by:||URLEND Trainees, 2011-2012 - 3/2012|
|Content Last Updated:||12/2015|