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Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities.  It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.  Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials. 

This knowledge path about caring for children and youth with special health care needs has been compiled by the Maternal and Child Health Library at Georgetown University. It offers a selection of current, high-quality resources that analyze data, describe effective programs, and report on policy and research aimed at developing systems of care that are family-centered, community-based, coordinated, and culturally competent. A separate section lists resources for families. The final part of the knowledge path presents resources that address specific aspects of care and development, such as advocacy, early intervention and special education, financing services, rehabilitation, screening, and transition. This knowledge path for health professionals, program administrators, policymakers, educators, researchers, and families will be updated periodically.

Click here to register for this webinar What: Going to college is both an exciting and scary step for everyone. If you are a young adult who happens to have a disability or chronic health condition, that transition can add a whole other list of things to think about- but it doesn’t mean that you can't have a great experience!  Tune into this episode of Got Transition Radio as hosts Mallory Cyr and Eileen Forlenza offer their insight about what high school students- with and without special health needs- might think about as they begin the college transition process. During the show, they will be asking their listeners to share personal lessons learned as well as taking their comments and questions. Don't miss this chance to hear and share your own adventures with college transition. When: Wednesday, October 26, 2011 1:00 - 1:30pm Mountain

Every day individuals advocate on behalf of themselves or others to communicate needs, share experiences, and take steps to get what they want and need. The online Advocacy ATLAS is a toolkit created by Genetic Alliance, Parent to Parent USA, and Family Voices that provides individuals with special healthcare needs and their families with tools and strategies to advocate for whatever they may need. Resources are grouped by category on the Advocacy ATLAS landing page. Simply click one of the ten topic areas to get started browsing accessible tools!

Transition is never easy, however this process is usually more difficult for young adults with special health care needs who have been receiving care from specialized pediatric treatment settings and providers.  This video looks at how Jim and his family prepared for health care transition and their current efforts to complete the process.

A little remarked upon requirement in the health law expands treatments for people with cerebral palsy, autism and other developmental disabilities. But some advocates and policy experts are concerned that insurers may find ways to sidestep the new requirement. The health law requires that individual and small group plans sold on or off the health insurance marketplaces cover 10 essential health benefits, including “rehabilitative and habilitative services and devices.”

In the United States, caring for a child with special health care needs usually means higher medical expenses for a family - particularly for low-income families, who spend a disproportionally large share of their income on their child's care. Yet the amount of financial burden for these families also depends on their state of residence, according to Paul T. Shattuck, PhD, professor of social work at Washington University in St. Louis [Pediatrics, 124: S435-S442]. "The percentage of low-income families in a given state with out-of-pocket expenses that exceeded 3 percent of their income varied considerably according to state and ranged from 5 percent to 25. 8 percent (District of Columbia and Montana, respectively). Families living in states with more generous Medicaid and State Children's Health Insurance Program (SCHIP) benefits report less financial burden," Dr. Shattuck said.

Research has shown that families raising children with disabilities face exceptionally high rates of financial hardship, which can have a negative effect on the children's well-being.

Defying the odds, conjoined twins born critically ill last year in University of Illinois Medical Center at Chicago have reached a major milestone: their first birthday.