Current as of November 2017 This info in Spanish | Esta información en español The IEP must contain a statement of the special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child. We’ve split up the discussion of each of these important […]
When a baby is born with cytomegalovirus (CMV) infection, it is called congenital CMV infection. About 1 out of every 200 babies are born with congenital CMV infection. Women can pass CMV to their baby during pregnancy.
According to the Centers for Disease Control and Prevention (CDC), only about 1 in 5 babies with congenital CMV infection will be sick from the virus or will have long-term health problems, but those problems can include hearing loss, vision loss, intellectual disability, muscular weakness, and even seizures.
The Centers for Medicare & Medicaid Services (CMS) and SAMHSA just released a publication entitled Roadmap to Behavioral Health: A Guide to Using Mental Health and Substance Use Disorder Services. The Roadmap is designed to serve as a behavioral health resource for consumers and offers important information about mental health and substance use disorder services. It includes definitions of behavioral health terms and guidance on how to find a behavioral health services provider, receive treatment, and obtain follow-up care.
There’s also a companion guide, Roadmap to Better Care and a Healthier You, which explains what health coverage is and how to use it to get primary care and preventive services. The companion roadmap is available in English, Arabic, Russian, Chinese, Spanish, Haitian-Creole, Vietnamese, and Korean. There is also a Tribal version.
This collection of helpful resources from the Social Security Administration provides information on and links to a wide variety of employment supports and national and community resources.
Shared Decision-Making and Children with Disabilities: Pathways to Consensus, a clinical report published by the American Academy of Pediatrics (AAP), states that children, when cognitively able, should be involved in decisions about their care. Too often this is mistaken by parents and professionals to only mean “the big decisions,” but research shows that inclusion in smaller decisions as well can have a significant impact over time.
Presenting children with information—appropriate for their developmental age—can help in their understanding of their condition and treatments, reduce fear, and enhance self-confidence.
This article shares multiple tips for parents to ensure that their child is appropriately informed and involved. Read the article here.
Disability Fact Sheet Resources updated, June 2017 “Alone we are rare. Together we are strong.” Slogan of Rare Disease Day —February 29, 2012. Roughly 7,000 rare diseases/disorders have been identified as affecting the human race. Because they are rare, it can be a real challenge for a person to be accurately diagnosed. Finding effective treatments, especially […]
(2016) | Useful to Parent Centers to offer training to families and others about Section 504 and students with medical disabilities. This 26-minute video is a product of the Utah Parent Center. Other Parent Centers can use the video in their own trainings or connect families with the video online for their own convenient viewing. […]
(2017, March) | Useful to: Parent Centers working with families affected by kidney disease. Easily shared! This article from Friendship Circle is written by a parent of a new baby who had an “incurable kidney disease” that would “require her to have a kidney transplant early in her life.” The article discusses the impact of […]
Updated 2017 In Spanish | En español The nation’s special education law is called the Individuals with Disabilities Education Act, or IDEA. As part of making special education and related services available to children with disabilities in the public schools, IDEA defines the term “child with a disability.” That definition includes specific disability terms, which […]
Updated March 2017 There are many, many organizations and groups that deal with mental health. This page will help you find the one or ones that offer the type of assistance, intervention, or information you’re seeking. We’ve organized the information into the following sections: If it’s a crisis… A quick-read fact sheet Be sure to […]