Project Access – Project Access: Improving Care to Children with Epilepsy
• Project Access Overview (ppt)
• Project Access Fact Sheet (doc)
• Epilepsy Foundation of America
http://www.epilepsyfoundation.org/
The Epilepsy Foundation of America® is the national voluntary agency solely dedicated to the welfare of the more than 3 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by more than 50 Epilepsy Foundation affiliates around the country.
• Epilepsy Foundation Teen site
http://www.epilepsyfoundation.org/living/children/teens/index.cfm
A video for middle and high school students, Seizures and You: Take Charge of the Facts, is part of a multi-year effort to educate teens, dispel myths and reduce the perceived stigma associated with epilepsy. Site also gives results of a 2001 national survey of teens about epilepsy.
• Epilepsy Foundation eCommunities: Teen Forum
http://www.epilepsyfoundation.org/efforums/forum/categories.cfm?catid=5 A free on-line forum that allows youth to talk with other youth 24/7
• Epilepsy Foundation Annual Report for 2007
http://www.epilepsyfoundation.org/aboutus/upload/AnnualReport07.pdf
The Epilepsy Foundation will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through services, education, advocacy and research.
• Project Access forms, including model 504 Plan in English and Spanish and a Seizure Action Plan
http://www.epilepsyfoundation.org/local/norcal/Project-Access.cfm
Other Epilepsy-Related Resources
You Are Not Alone: Toolkit for Parents of Teens with Epilepsy
http://www.cdc.gov/Epilepsy/toolkit/resource_guide.htm
You Are Not Alone is a toolkit developed specifically for parents of teens who have epilepsy. Parents know that the transition from childhood into adulthood often includes emotional, psychological, and social challenges for any teen. But a teen with epilepsy, especially when newly diagnosed, may have additional anxiety and confusion due to epilepsy's complexity and unpredictability. When other people (including teachers, other children, and other parents) do not understand or are afraid of this teen who may appear different, a communication barrier can develop, creating further misunderstanding, isolation, and discouragement. Parents can play an important role in preventing this. When their children with epilepsy become teenagers, they can encourage and assist them in taking responsibility for themselves, while at the same time helping them accept the limitations on their freedom and choices that may be necessitated by the seizure disorder. The materials in this toolkit are designed to support this effort.
Epilepsy Surveillance Among Adults --- 19 States, Behavioral Risk Factor Surveillance System, 2005; Reported August 8, 2008 in CDC’s MMWR
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5706a1.htm
The Association of State and Territorial Chronic Disease Directors endorsed a role for state public health departments in developing epilepsy surveillance capacity and establishing strong working relationships with other government agencies and with nongovernmental lay and professional groups (86). State and local public health agencies can work with their local Epilepsy Foundation affiliates, other groups such as the Epilepsy Therapy Project (available at http://www.epilepsy.com) that support persons with epilepsy and their families, and social service agencies to promote awareness and reduce social stigma, provide community and professional education about epilepsy, address employment and transportation needs, and provide referral and support for health promotion and disease prevention for persons with epilepsy.
The Role of Public Health in Addressing Lower Prevalence Chronic Conditions: The Example of Epilepsy (2003)
http://www.chronicdisease.org/files/public/epilepsy_report.pdf
A Report Prepared by the Chronic Disease Directors, National Center for Disease Prevention and Health Promotion, Centers for Disease Control and Prevention
States can approach epilepsy in a coordinated and comprehensive manner similar to that used for other public health chronic disease prevention and control programs. Recommended epilepsy program areas included: assessment, epidemiology and surveillance; partnerships; state plans; intervention; and evaluation. The state health department was seen as quite capable of carrying out activities in these areas, and specific action steps were recommended for each.
NICHQ – Learning collaboratives about epilepsy
http://www.nichq.org/nichq/programs/collaborativelearning/epilepsy2005.htm
Awareness and Access to Care for Children and Youth with Epilepsy Needs Assessment -- Final Report by Barbara A. Ormond
http://www.urban.org/publications/411373.html
In fall 2004, the Department of Health of the District of Columbia undertook a demonstration project, "Awareness and Access to Care for Children and Youth with Epilepsy," with the goal of developing, implementing, and evaluating systems strategies to improve access to information and care for children and youth with epilepsy in underserved areas of the District. The project included as one component a needs assessment, the first ever conducted in the District, to gather information regarding children with epilepsy, with a particular focus on children living in designated Medically Underserved Areas (MUAs). The needs assessment is intended to highlight needed changes within the health services delivery system for children and youth with epilepsy and provide relevant information for strategic planning and development of subsequent activities. It is based on a review of the literature, existing data from Medicaid managed care organizations (MCOs) and on clients in fee- for-service Medicaid, hospital discharge data, a report on interviews with key informants, a report on a survey of school nurses, and findings from focus groups with young adults with epilepsy and caretakers of young adults with epilepsy.
Transition for Youth with Other Conditions
Transition in general
• Royal Children’s Hospital, Melbourne, Australia
http://www.rch.org.au/transition/patients.cfm?doc_id=8144
Site includes description of transition rights and responsibilities and information for young people
• Connecticut Children’s Medical Center
ccmckids.org/programs/transition.asp
Transition for youth with a variety of conditions
• Student Involvement in Reforming Health Care
http://www.rooseveltinstitution.org/policy/health/rooseveltrx
Roosevelt Rx is a the nonpartisan national health policy center of the Roosevelt Institution. The Roosevelt Rx initiative aims to serve as a catalyst to bring student ideas and student action to the health care policy process.
Autism
• Autistic Spectrum Disorders: Guidelines for Effective Interventions:
http://www.asdguidelines.org/news.html
The goal of the project is to make available state–of–the–art information on evidence–based treatments and interventions for persons with ASD, their families, and professionals caring for these persons in California. A section to be included in the final document is Transition to Adulthood and Special Considerations for Adults with ASD.
• Ohio Autism guide – includes transition http://ddc.ohio.gov/Pub/ASDGuide.htm
Cardiac Conditions
• University of California at San Francisco Medical Center Specialized Services
Congenital Heart Transition Program
http://www.ucsfhealth.org/adult/special/c/114948.html
• Children’s Hospital, Boston, Adult Congenital Heart Service Transition Clinic
http://www.childrenshospital.org/clinicalservices/Site460/mainpageS460P11sublevel19.html
Cystic Fibrosis
Transition Checklist for Young People with Cystic Fibrosis
http://www.health.nsw.gov.au/gmct/transition/factsheets/checklist_cystic_fibrosis.pdf
Developed by John Hunter Children’s Hospital in Australia.
Deaf and Hard of Hearing
Quality standards and good practice guidelines: transition from paediatric to adult audiology services (2005) from England
http://www.library.nhs.uk/guidelinesfinder/ViewResource.aspx?resID=149100
Gastro-intestinal Conditions
• Transition Planning Checklist for youth with gastroenterology issues
http://www.health.nsw.gov.au/gmct/transition/factsheets/checklist_gastrointestinal.pdf
• Transition and Inflammatory Bowel Disease
http://www.ibdtransition.org.uk/downloads/IBD_Transition_Guide_Health_Professionals.pdf
http://www.ibdtransition.org.uk/downloads/IBD_Transition_Guide_Parents.pdf
Transition to Adult Health Care Guidance for Professionals
Transition to Adult Health Care Guidance for Parents
PDF booklets that are downloadable
Published in 2008 by the British Society for Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN), the IBD Section of the British Society for Gastroenterology (BSG), the Colitis and Crohn’s Nurses Group of the Royal College of Nursing (RCN), Crohn’s in Childhood Research Association (CICRA) and the National Association for Colitis and Crohn’s Disease (NACC).
• Transition of the Patient With Inflammatory Bowel Disease From Pediatric to Adult Care: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. Medical Position Papers
Journal of Pediatric Gastroenterology & Nutrition. 34(3):245-248, March 2002.
Baldassano, Robert; Ferry, George; Griffiths, Anne; Mack, David; Markowitz, James; Winter, Harland
PDF available at:
http://tinyurl.com/5uvknx
Hemophilia
Transition Guidelines for People with Bleeding Disorders http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=57&contentid=207
Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation 2003
PKU
University of Washington PKU Clinic
Adolescent Transition: PKU Clinic Adolescent Transition Curriculum
depts.washington.edu/pku/
Sickle Cell
Transition of Patients with Sickle Cell Disease from Pediatric to Adult Care (2000)
http://sickle.bwh.harvard.edu/transition.HTML
Renal Disease
Adolescents with renal disease in an adult world: meeting the challenge of transition of care
Paper by Lorraine Bell in Nephrology Dialysis Transplantation Journal (2007)
PDF of paper: http://ndt.oxfordjournals.org/cgi/content/full/gfl770v1
Youth Leadership
Please see other HRTW Topical Call Resources on Youth Leadership at: http://www.hrtw.org/hrtwu/calls/073008_Overview.html
Kids as Self Advocates
www.fvkasa.org
Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need. We are leaders in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various issues. We also help health care professionals, policymakers and other adults in our communities understand what it is like to live our lives and we participate in discussions about how to help each other succeed. KASA is a Family Voices project funded by the U.S. Maternal and Child Health Bureau and the Administration on Developmental Disabilities
Miscellaneous
Forming Groups on Facebook [doc]
Instructions for creating groups and setting up a customized page on Facebook.
EFA National Youth Leadership Conference Agenda [doc]
Agenda for the September 18-21, 2008 Epilepsy Foundation National Youth Leadership Conference
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