Resources for Caregivers
Hospital 411: Tips Every Parent Should Know
In an effort to contribute to the body of resources available to help parents and caregivers prepare for hospital visits, CLC teamed up with WeissComm Partners, the PR firm representing Anesiva, Inc, and Dr. William Sears to create the educational program, “Hospital 411: Tips Every Parent Should Know.” The “Hospital 411” program formerly included a website and provided educational materials designed to help parents support their children during hospital visits, especially the tough issue of managing pain associated with common procedures. The following resources were adapted from these materials:
- Comfort Measures and Tips - These simple techniques–-from positioning to distraction, environment to word choice–can work together to keep a hospital experience positive.
- Power to the Parents Tip Sheet - Advanced preparation can make a big difference in easing the anxiety associated with hospitalization. This document provides 10 tips to help parents make the hospital experience a little easier for themselves and for their children.
- Hospital Wallet Card - Parents can personalize this printable wallet card with information they’ll need when taking their child to the hospital or emergency department.
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Family Support and Information
- Band-Aides and Blackboards: http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/index.html - The intent of the site is to sensitize people to what it's like to grow up with a medical problem. Provides information about chronic illness, teacher tips, support groups, etc.
- Council for Exceptional Children: www.cec.sped.org - An international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted. CEC advocates for appropriate governmental policies, sets professional standards, provides continual professional development, advocates for newly and historically underserved individuals with exceptionalities.
- Council of Parent Attorneys and Advocates: www.copaa.net - An independent, nonprofit organization of attorneys, special education advocates and parents. COPAA's mission is to be a national voice for special education rights and to promote excellence in advocacy.
- Exceptional Parent Magazine: www.eparent.com - An online community that provides information and advocacy for parents to care for their seriously ill child.
- Family Voices: www.familyvoices.org - Family Voices, a national grassroots network of families and friends, advocates for healthcare services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special healthcare needs.
- Genetic Alliance: www.geneticalliance.org - The Genetic Alliance is a coalition of more than 600 advocacy organizations serving 25 million people affected by 1000 conditions. The organization works to transform leadership in the genetics community to build capacity in advocacy organizations and to educate policymakers by leveraging the voices of individuals and families.
- Merck Manual: www.merckmanuals.com - Merck & Co., Inc. is a global research-driven pharmaceutical company that publishes unbiased health information as a not-for-profit service. The Merck Manuals are a trusted source for medical information available free online.
- MUMS: Mothers United for Moral Support: www.netnet.net/mums - A national Parent-to-Parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition. MUMS' main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.
- National Association for the Education of Young Children: http://families.naeyc.org - This organization is dedicated to improving the well-being of all young children, with particular focus on the quality of educational and developmental services for all children from birth through age 8.
- National Center for Learning Disabilities: www.ncld.org - An online guide to essential information about learning disabilities, early literacy and learning resources, support for adolescents and adults with learning disabilities, public policy and advocacy tools.
- Children's Cancer Association: www.ChildrensCancerAssociation.org - Offers award-winning programs, along with information, advocacy and support that help enrich the quality of life for seriously ill children and their families. The Kids’ Cancer Pages national resource directory contains hundreds of resources relating to all aspects of pediatric cancer, including medical treatments, pain management, financial aid, advocacy, health care assistance, homecare, health sites/information. Designed mostly for children with cancer, but has general topics that apply to other medical conditions.
- Parent Advocacy Coalition for Educational Rights: www.pacer.org - The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.
- Tufts University Child and Family WebGuide: www.cfw.tufts.edu - The WebGuide is a directory that evaluates, describes and provides links to hundreds of sites containing child development and health research and practical advice. Topics are selected on the basis of parent recommendations; they cover all ages, from early child development through adolescence.
- Wrightslaw Advocacy Site: www.wrightslaw.com - Provides parents, advocates, educators, and attorneys with accurate, up-to-date information about special education law and advocacy for children with disabilities.
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Activity Websites for Children and Teens
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