Publications


Health and Healthy Living


Title: Advocates for Youth
Link: http://www.advocatesforyouth.org/index.htm
Description: Advocates for Youth is dedicated to creating programs and advocating for policies that help young people make informed and responsible decisions about their reproductive and sexual health. Advocates for Youth provides information, training, and strategic assistance to youth-serving organizations, policy makers, youth activists, and the media in the United States and the developing world.

Title: American Association on Health and Disability
Link: http://aahd.webchoices.us/page.php
Description: The American Association on Health and Disability's (AAHD) mission is to support health promotion and wellness initiatives for people with disabilities at the federal, state, and local level; to reduce the incidence of secondary conditions in people with disabilities; and to reduce health disparities between people with disabilities and the general population.

Title: Healthcare Transition Training
Link: http://hctransitions.ichp.ufl.edu/ddcouncil
Description: Healthcare transition is a process that takes time and planning. This Web site has been developed as a learning resource for individuals who are either in the process of transition, or about to be, and provides transition training.

Source: The Florida Developmental Disabilities Council, Tallahassee, FL

Title: National Women's Health Information Center: Women with Disabilities
Link: http://www.4women.gov/wwd
Description: The National Women's Health Information Center (NWHIC) provides useful information for women with disabilities, caretakers, health professionals, and researchers.

Title: Health History Summary
Link: http://depts.washington.edu/healthtr/healthhistory/summary.doc
Description: The Health History Summary is a summary form of a teen's health and medical history, current status, supports, etc, which may help a young person prepare for a doctor's appointment.
Source: EST

Title: What does Health Have to Do with Transition? Everything!
Link: http://www.ncset.org/publications/viewdesc.asp?id=2967#top
Description: This brief, from the National Center on Secondary Education and Transition, provides information on the benefits of and strategies for including health in the Individualized Education Program (IEP) process. This brief was written for parents of students in transition, but can easily be adapted to directly address youth in transition.
Source: EST

Title: Build Your Own Care Notebook
Link: http://www.medicalhomeinfo.org/tools/care_notebook.html
Description: The National Center of Medical Homes Initiatives offers a list of downloadable forms with which you can build your own Care Notebook. All Care Notebook forms are made available in both Microsoft Word and Adobe PDF versions.
Source: EST

Title: Curriculum on Abuse Prevention and Empowerment (CAPE)
Link: http://www.wid.org/programs/health-access-and-long-term-services/curriculum-on-abuse
e-prevention-and-empowerment-cape/curriculum-on-abuse-prevention-and-empowerment-cape
Description: CAPE explores fundamental issues of abuse, best-practices training approaches, and stories of disabled people confronting and resisting abuse. CAPE also helps teachers adapt learning activities for use at disability and senior community events, rehabilitation sessions, schools and independent living training sessions. CAPE offers learning tools that appeal to wide audiences, including stories, movies, comic book scenes, quizzes, and games in formats that learners already regard as fun and entertaining. CAPE is funded by the National Institute on Disability Rehabilitation and Research (NIDRR). All of the resources in this curriculum are available in both English and Spanish.
Source: EST

Title: Depression and Disability: A Practical Guide
Link: http://www.fpg.unc.edu/~ncodh/pdfs/depression.pdf
Description: This booklet, published by the North Carolina Office on Disability and Health and written by clinical psychologist Dr. Karla Thompson, addresses basic information about depression, common symptoms and treatments of depression, and why people with disabilities may be at an increased risk for depression. It is also available in Spanish: http://www.fpg.unc.edu/~ncodh/pdfs/depressionsp.pdf.
Source: EST

Title: Substance Use Among Young Adults With Disabilities
Link: http://ies.ed.gov/ncser/pdf/20083009.pdf
Description: This report was released by the National Center for Special Education Research (NCSER) on May 20, 2008. The report uses data from the National Longitudinal Transition Study-2 (NLTS2) to answer questions about the use of alcohol, cigarettes and illegal drugs such as marijuana, cocaine, and LSD among young adults with disabilities. The report compares substance use among this population with substance use in the general population, and compares different disability categories and demographic groups in substance use and in the receipt of substance abuse prevention education and services. The NLTS2 is funded by the National Center for Special Education Research at the Institute of Education Sciences, US Department of Education. NLTS2 was initiated in 2001 and has a nationally-representative sample of more than 11,000 students with disabilities. For further information please contact David Malouf at 202-219-1309 or david.malouf@ed.gov.
Source: EST

Title: Health Resource Booklets
Link: http://www.fpg.unc.edu/~ncodh/Publications.cfm
Description: The North Carolina Office of Disability and Health has published several booklets on Health-related topics:

Health Promotion Resource Guide (http://www.fpg.unc.edu/~ncodh/pdfs/healthpromotionguide.pdf) This guide provides health educators, service providers, and program planners a carefully selected collection of resources that address accessibility, communication, and topic specific health promotion.

Partners in Health Care (English: http://www.fpg.unc.edu/~ncodh/pdfs/partners.pdf, Spanish: http://www.fpg.unc.edu/~ncodh/pdfs/partnerssp.pdf) This brochure is filled with tips for health care providers in promoting the health of people with cognitive and physical disabilities.

Removing Barriers to Health Care: A Guide for Health Professionals (http://www.fpg.unc.edu/~ncodh/pdfs/rbhealthcare.pdf) This booklet, developed by NCODH and the Center for Universal Design at N.C. State University, walks the health care provider through the process of making a medical facility physically accessible. It is complete with specific ADA requirements, picture illustrations, and some helpful tips on creating accessible environments and services.

Removing Barriers: Tips and Strategies to Promote Accessible Communication (http://www.fpg.unc.edu/~ncodh/pdfs/rbtipsandstrategies.pdf) This booklet is an easy-to-read, quick reference guide that addresses the basics on ways to effectively communicate and interact with people with disabilities.
Source: EST

Title: Healthy and Ready to Work
Link: http://www.hrtw.org/
Description: The Healthy and Ready to Work (HRTW) Web site focuses on understanding systems, access to quality health care, and increasing the involvement of youth. It also includes provider preparation plus tools and resources needed to make more informed choices.
Source: EST

Title: In the Driver's Seat: A Guide to Self-Directed Mental Health Care
Link: http://www.hcbs.org/moreInfo.php/doc/2285
Description: This guide from the Bazelon Center for Mental Health provides information and advice necessary for effective self-directed mental health care. A self-directed program gives individuals flexibility to use money set aside for health care in new ways to advance the goals of their individualized plan. This guide uses lists, question-and-answer sections, and fact sheets to present and organize information on evaluation, eligibility, financing, and planning a self-directed program. The guide hopes to stimulate advances in the mental health care field, and it encourages groups and individuals to speak out for what could enable people living with mental illnesses the ability to enjoy "rewarding lives and full community integration."
Source: EST

Title: Health Transition Videos
Link: http://video.ichp.ufl.edu/
Description: The University of Florida's Institute for Child Health Policy offers streaming videos about health care transitions. Titles include:
  • Talking With Your Doctor
  • This is Health Care Transition
  • Health Care Transition: College and Beyond
  • Health Care Transition: Jim's Story
  • Healthy and Ready to Work.
Source: EST

Title: Transitioning Adolescents to Adult Health Care
Link: http://www.hscfoundation.org/aboutus/publications/Fact%20Sheet.pdf
Description: The HSC Foundation, in collaboration with The National Alliance to Advance Adolescent Health (formerly Incenter Strategies) is pleased to announce the availability of a new Fact Sheet on the provision of transition support services in pediatric practices.

This Fact Sheet presents new national data on the transition support services offered in pediatric practices to adolescents with special needs and the barriers affecting their availability. The data found that most pediatric practices do not initiate transition planning early in adolescence or offer the transition support services identified as critical for ensuring a smooth transition to adult health care. Gaps in transition support are due in part to limited staff training; lack of an identified staff person responsible for transition; financial barriers; and anxiety on the part of pediatricians, adolescents, and their parents about planning for their future health care.

The fact sheet is authored by Margaret McManus, Harriette Fox, Karen O'Connor, Thomas Chapman, and Jessie MacKinnon.

Click on the above link to view or download the Fact Sheet.
Source: EST

Title: Americans Speak on Health Reform: Report on Health Care Community Discussions
Link: http://www.healthreform.gov/reports/index.html
Description: A report released by the Department of Health and Human Services, Americans Speak on Health Reform: Report on Health Care Community Discussions, summarizes comments from the thousands of Americans who hosted and participated in Health Care Community Discussions across the country. The report highlights the need for immediate action to reform health care.
Source: EST

Title: Health Jeopardy Game
Link: http://www.emergingleadersnw.org/doc
cuments/Health_jeopardy_template-1.ppt
Description: Emerging Leaders Northwest has created an online Jeopardy Game to help people learn about their health. Categories include:
-We can work it out
-What's eating you?
-Don't drink the water!
-Good night!
-Take charge of your healthcare

The game gives you the answer, then you must come up with the correct question. Click on a number to start, continue to click to reveal the category, then the answer, then the question. When you are ready for another turn, click on the house on the lower-right side of the board.
Source: Emerging Leaders Northwest

Title: Abuse of Children with Cognitive, Intellectual & Developmental Disabilities
Link: http://www.thearc.org/NetCommunity/Document.Doc?&id=144
Description: This document, published by the Arc, contains information on the abuse and neglect of children with cognitive, intellectual and developmental disabilities and how to help prevent and report abuse. Clicking on the above link will open a Microsoft Word document.
Source: EST

Title: The National Hispanic Family Health Helpline
Link: http://www.hispanichealth.org/folletos/
Description: Su Familia (Your Family): The National Hispanic Family Health Helpline
(1-866- SU FAMILIA or 1-866-783-2645)

Su Familia offers Hispanic consumers free reliable and confidential health information in Spanish and English and helps navigate callers through the health system. Nationwide resources and local referral services are provided depending on the need of the caller. Staffed by bilingual health promotion advisors the helpline provides basic information on a wide range of health topics.

Using zip code information to search our up-to-date database of over 22,000 providers, health promotion advisors are able to refer consumers to health care facilities in their community.

To provide consumers with culturally proficient health information, over 100 Fact Sheets (FAQs) have been developed on a wide array of health topics, including: infant mortality, cancer and cancer treatment, cardiovascular disease, child and adult immunizations, diabetes, HIV/AIDS, mental health issues, Parkinson’s disease, hypertension, autism, adult and adolescent depression, and more. Fact sheets are available on the Alliance Web site and over half are available in Spanish. Click on the above link for the fact sheets in Spanish.
Source: EST

Title: People with Disabilities Experience Low Health Literacy
Link:
Description: Low health literacy is a disparity between a patient's ability to understand medical information and a medical provider's ability to explain this information clearly. According to the Institute of Medicine, 90 million Americans have low health literacy, but the percentage is higher among people with any type of disability and who are English language learners (ELLs). In two separate studies from researchers at the University of Missouri, people with disabilities and ELLs felt their medical providers often did not listen to them, explain options, or treat them with respect. Few doctors have multi-language backgrounds, which makes access to healthcare for ELLs more difficult.

Full Story: Health Literacy Lower for the Disabled, United Press International, Nov. 3, 2009.

See Also: Christian Basi, Health Information Not Communicated Well to Minority Populations, MU Researcher Finds, News Bureau University of Missouri, Oct. 29, 2009.

Information provided by:
The Disability Law & Policy e-Newsletter. An electronic publication of The Law, Health Policy & Disability Center at the University of Iowa College of Law and
The Burton Blatt Institute at Syracuse University.
Source: EST

Title: Access To Medical Care For Individuals With Mobility Disabilities
Link: http://www.ada.gov/medcare_ta.htm
Description: This 19-page publication from the Department of Justice provides guidance for medical care professionals on the ADA’s requirement to provide accessible health care to individuals with mobility disabilities and includes an overview of general ADA requirements, commonly asked questions, and illustrated examples of accessible facilities, examination rooms, and medical equipment.
Source: EST

Title: Medicare & The New Health Care Law - What it Means for You
Link:
Description: Medicare beneficiaries will soon receive information in the mail about the immediate benefits they may see from the new the Affordable Care Act. The first benefit that several million Medicare beneficiaries will receive is a one-time check for $250, if they enter the Part D donut hole and are not eligible for Medicare Extra Help. The donut hole, or coverage gap, is the period in the prescription drug benefit in which a beneficiary pays 100 percent of the cost of their drugs until they hit the catastrophic coverage. Next year, all beneficiaries who enter the gap will get a 50 percent discount for covered brand name Part D drugs. Also beginning next year, Medicare beneficiaries will get preventive care services like colorectal cancer screening and mammograms without cost-sharing, in addition to an annual wellness visit. A fact sheet about Medicare and the new health care law is available in English and Spanish.
Source: EST

Title: HealthCare.gov
Link: http://www.healthcare.gov/index.html
Description: The U.S. Department of Health and Human Services has announced a new website called HealthCare.gov. This new tool lets consumers take control of their health care by connecting them to information about quality, affordable health care coverage.

HealthCare.gov is the first central database of health coverage options--from Medicare to the new Pre-Existing Conditions Insurance Plan, with information from more than 1,000 private insurance plans.

HealthCare.gov answers questions that relate to people with disabilities and health care, and also has information about insurance plans and community services in every state. Take a video tour of this new website.
Source: EST