Materials, Policy Briefs & Tools
developed by the HRSA/MCHB funded Healthy & Ready to Work Projects

TYPE OF TOOL NAME OF TOOL AND DESCRIPTION WHERE TO FIND TOOLS & SOLUTIONS ACCESSIBILITY Community Living SURVEY-Community Access Surveys: AccessibilityHRTW-AZ, 2003. The purpose of the Survey is to assess access issues faced by people who are disabled in the community setting. Survey has several sections: entry & parking lot, getting around (elevator, space to maneuver wheelchair, seating), bathroom facilities, public transportation, stores, and concession stand.) Tool can be used by youth or others. [pdf] SURVEY-Community Access Surveys: Baseball Stadium in Arizona, HRTW-AZ, 2003. The purpose of the Survey is to assess access issues faced by people who are disabled while attending a baseball game or event held at the stadium. Survey has several sections: entry & parking lot, getting around (elevator, space to maneuver wheelchair, seating), bathroom facilities, public transportation, and concession stand.) Tool can be used by youth or others. [pdf] SURVEY-Community Access Surveys: Movie Theaters in Arizona, HRTW-AZ, 2003. The purpose of the Survey is to assess access issues faced by people who are disabled when attending a movie. Survey has several sections: entry & parking lot, getting around (elevator, space to maneuver wheelchair, seating), bathroom facilities, public transportation, and concession stand.) Tool can be used by youth or others. [pdf] SURVEY-Community Access Surveys: Shopping Malls in Arizona , HRTW-AZ, 2003. Shopping at a Mall is a common experience for most Americans. Persons with disabilities should find the Mall and shops in the Mall accessible and sales persons helpful and pleasant. Survey has several sections: entry & parking lot, getting around (elevator, space to maneuver wheelchair, seating), bathroom facilities, stores, public transportation, and food court, security.) Tool can be used by youth or others. [pdf] Health Care Setting CHECKLIST-Physician Environment of Health Care Facilities. HRTW-AZ, 2003. Providers or families evaluate the accessibility and amenities of health care facilities. [pdf] DATA     Data DATA SOURCES TO KNOW for Tracking Youth Transitioning to Adulthood, HRTW National Center, 2003. Measuring and monitoring youth transition experiences is important to determine if programming is effective. States and other agencies can use existing data sources to track the effectiveness of their programming. Data sources are listed with their websites and some examples of how data from local surveys can be compared with data from these sources. [Word] [pdf] Data - Outcome HRTW TOOL: Core Transition Outcome Data Survey Questions, HRTW National Center , 2004. These survey questions address key transition issues of youth with special needs, including medical home, insurance, independent living skills, and youth decision making. [Word] [pdf] SURVEY-Youth Telephone Interview - Phone Survey, HRTW-AZ, 2003. Survey to learn more about what happens to young adults as they leave Arizona ’s Children’s Rehabilitative Services. Areas addressed: demographic, language, diagnosis, living arrangement, insurance, SSI, Medicaid, Medical Home, access to health care, medications, health status, self care, wellness, independence skills, post-secondary experiences, transition plans, work goals, social skills, transportation, situational responses, mental health. [pdf] HRTW CURRICULUMS, GUIDES & TRAINING MODULES Assessment - Clinical CHECKLIST - Life Maps Teaching Sheets One-pagers related to topics, HRTW-KY, 2003. (click on Transition Resources on left side of page) Also see - Life Maps – screening tools for ages birth through 21. chfs.ky.gov/ccshcn CHECKLIST - Life Maps, HRTW-KY, 2003. Screening tools for ages birth through 21. (click on Transition Resources on left side of page) chfs.ky.gov/ccshcn Child Health Status Assessment (CHSA) HRTW-AZ, 2002. Parents use the CHSA to evaluate their children’s health status on a daily basis, record changes across time, communicate to health and other service providers, and organizes child and family health records and events. Parents use the CHSA to communicate their child’s status to primary care providers as well as emergency room and hospital staff. English [word] [pdf] Español [word] [pdf] Long Term Care Form, HRTW-AZ 2002. The LTC was developed as a practical and concise but comprehensive tool to guide physicians’ evaluations of CYSHCN. [word] Assessment - Health Care Health Care Process Evaluation, HRTW-AZ, 2002. Providers or families evaluate process of care provided by health care facilities. [pdf] Assessment - Health Status Medical Teaching Exam, How Well Do You Know Yourself? HRTW-AZ 2002. Designed to help youth assume responsibility for their health care and to transition to adult providers. The Exam reviews systems, diagnoses, health care regimes and insurance provider information. [word] Benefits - SSI & Medicaid FINANCES & BENEFITS: Section 301: How to Keep SSI and Medicaid after your 18th birthday, HRTW-OH, 2001. Fact sheet that highlights what you need to know to maintain SSI and Medicaid. In addition there is information about a little known regulation – Section 301, which allows youth to keep their SSI Benefits and Medicaid if they receive services from VR – when they do not meet disability criteria during SSI redetermination. [word] [pdf] Benefits - SSI Work Incentives Special Help for Youth in Transition – SSI Work Incentives and VR, HRTW-KY , 2003. (click on Transition Resources on left side of page) chfs.ky.gov/ccshcn Communication - All HRTW TIPS: Improving Communication: Action & Results, HRTW National Center, 2004. As a leader your skills and opinions are valued by others. But there may be times when others will not agree with you. Always check and double-check your facts so that you can back up your ideas and opinions. [Word] [pdf] Communication - Pediatricians SURVEY- Quality Indicators of an Effective Pediatrician/Physician Communication Sheet, HRTW-AZ, 2003. Families and physicians complete the sheet as a means of ensuring that families understand and are ready to implement medical recommendations. The form also has been adapted to promote communication between primary care and specialty care physicians. [pdf] Decision Making Guardianship and Alternatives to Guardianship in Wisconsin, HRTW-WI, 2003. VIDEO - Overview of decision-making choices available to families and youth as the youth approaches 18. CONTACT: Beth Swedeen swedeen@waisman. wisc.edu Developmental Disabilities HRTW TIPS: Top 10 Things to Know in Caring for Youth with Developmental Disabilities During Transition, HRTW National Center , 2004. Providing care for children and youth with developmental disabilities does not have to be much different then caring for youth with other special health needs. The opportunities for youth with developmental disabilities are great. Many youth live and work in the community, living full and typical lives. [word] [pdf] Health Care Record Keeping Portable Medical Summary – one page sample and template, HRTW National Center , 2003. Youth can carry this one page sheet in their wallets - and - also place in their medical file at home. Caregivers, health surrogates, school medical contacts or selected others may also want to have a copy too. Sample –medically complex. Template sample you can use or adapt! one page sample [word] [pdf] one page template [word] [pdf]   The Maine CARE Notebook, HRTW-ME, 2003. Designed to be a tool to assist caregivers in the recording keeping of their child’s life and medical journey. www.umaine.edu/ cci/ service/ maineworks/ carenotebook.htm Transition: HIP YIP (HIP- Youth Independence Plan) HRTW-AZ, 2003. HIP-YIP is a daily planner designed for youth includes a summary of health status and history, emergency forms for hospital and clinic visits, calendar and personal health information and weekly and monthly summaries of health and school status. CONTACT: Tanis Bryan .bryan@swifamilies.org HRTW Medical Notebook, HRTW-IA 2002. A three ring binder that enables participating YSHCN keep information about their medical conditions, pending appointments, etc. organized and accessible. CONTACT: Jack Hillyard, MSW Phone: 515-283-2310 E-mail: Jack-Hillyard@ uiowa.edu HRTW Handipac, HRTW-IA 2002. A credit-card size envelope that YSHCN can conveniently store in a wallet, purse, or backpack. The Handipac was designed so that youth could have their abbreviated medical information available at a glance and have a place to keep other medical information. CONTACT: Jack Hillyard, MSW Phone: 515-283-2310 E-mail: Jack-Hillyard@ uiowa.edu Health Information Guide to Spina Bifida, HRTW-AZ 2002. A guide to help youth better understand Spina Bifida. [pdf] Guide to Cerebral Palsy, HRTW-AZ 2002. A guide to help youth better understand CP. [pdf] Health Insurance Health Insurance Curriculum: Learning about Health Insurance – A grade 5-12 curriculum aligned with Maine ’s Learning Results. HRTW-ME, 2002. This curriculum was developed to educate middle and high school students about the benefits of health insurance coverage for individuals and families. www.umaine.edu/ cci/ service/ maineworks/ health inscurr/index.htm Independence 8 Steps to Follow when Hiring a Personal Care Attendant (PCA), HRTW-KY, 2003. (click on Transition Resources on left side of page) chfs.ky.gov/ccshcn Activities to Help Prepare for Independence, HRTW-KY, 2003. (click on Transition Resources on left side of page) chfs.ky.gov/ccshcn So You Want to Drive, HRTW-AZ, 2003. Guide - Many people with physical limitations want to drive, just like everyone else. Being able to drive makes it much easier to get around. The good news is that with the right training and equipment many people with physical limitations can drive safely, just as anyone else. Technology compensates for physical limitations. There are driving rehabilitation specialists, people who help figure out whether or not you have what it takes and what you need to get on the road. This Guide provides 5 steps to follow to discover whether you should drive, and if you can drive, what type of car and modifications will be needed. [pdf] How To Get Ready For Independent Living, HRTW-AZ, 2003. BROCHURE (10 pages) Areas addressed: 12 Question: What Do You Know about Transition; Understanding Privacy and Authorization/Release of Information; Overview of SSI Benefits/How to Apply; ADA What Does It Mean for You?; Managing Your Health Care, Overview of Vocational Rehabilitation/How to Apply; 50 Things You Can Do to get Ready for Transition; Independent Living Services; Sexuality & Relationships-Asking Questions and Getting Answers. [pdf] Tips for Arranging The Physical Environment, HRTW-AZ, 2003 BROCHURE (2 pages) – Checklists and tips on: Accessible and Easy to Find Items To Help You in Your Home; Medical Checklist & Ideas for Oxygen, Trachs, J-Tubes or G-Tubes and Ideas for Home and Away. [pdf] Medical Home Medical Home and Transition: A Life-Span Process, AAP Medical Home National Center and the Healthy & Ready to Work National Center, 2004 (second edition). This component of the Medical Home Training focuses on the roles and responsibilities of families, youth, physicians, and other providers in preparing for adult health care, work, and independence Manual [word] Manual [pdf] Presentation [ppt] Medical Appointment Adolescent Health Care – list of ideas for discussion/evaluation at health care visits, HRTW-KY, 2003. (click on Youth Transitions, then New Resources or Life Maps/ Teaching Sheets) chfs.ky.gov/ccshcn HRTW TIPS: Getting What You Need at Your Doctor Visit, HRTW National Center, 2004. When you make an appointment to see your doctor, whether if it's for a routine check-up or for a new health issue, there is more to do than just call the office to schedule the appointment planning ahead and being prepared can help lower your stress and make your visit more productive, both for you and your doctor. [word] [pdf] Medical Home Medical Home Screening Tool, HRTW-AZ 2002. Survey to help parents/youth/doctors assess whether the medical practice is a “Medical Home, “and if not the steps to take to qualify as a Medical Home. [pdf] HRTW Tips: Low Cost-No Cost Ideas for Physicians, HRTW National Center, 2003. Six easy to do steps to ensure medical office practice inclusive strategies. [word] [pdf] Sexuality Sexuality Issues for Youth with Disabilities and Chronic Health Conditions, HRTW-ICHP, 2000. Discussions on teen pregnancy view all teens as the same, except for cultural background and gender; programs are planned to meet the needs of this typical adolescent population. However, the subgroup of youth with disabilities — with unique needs that impact both their ability to learn and their choices for the future — is rarely acknowledged in the literature addressing teen pregnancy. [pdf] Transition Planning HRTW TIPS: Hackett & Gallivan Transition Top 10 List! HRTW National Center, 2003. Everyone deserves a future — but you cannot have one if you do not dream it and plan for it. Tips that worked from a mom and son who had a progressive neuromuscular disease and was technology dependent. [Word] [pdf] Areas of Assessment for Transition Planning – Transition Assessment Questions, HRTW-KY, 2003. (click on Transition Resources on left side of pages) chfs.ky.gov/ccshcn HRTW-PAR Curriculum, HRTW-AZ, 2003. Participatory Action Curriculum. The PAR Manual is a set of hands-on activities that guides parents, youth, and professionals to systematically find solutions to everyday problems. CONTACT: Tanis Bryan tanishbr@aol.com Transition for Adolescents with Special Health Care Needs and Disabilities: Information for Families and Teens. HRTW-MA, 2000. Contains tools and checklists. community inclusion.org/ transition/ familyguide.html Transition for Adolescents with Special Health Care Needs and Disabilities: A Guide for Health Care Providers. HRTW-MA, 2000. Addresses four aspects of adulthood: health, education, employment and recreation. community inclusion.org/ transition/ provider guide.html Transition Guidelines for ages 11-21, HRTW-KY, 2003. Includes 2010 Healthy People Objectives, (click on Transition Resources on left side of page) chfs.ky.gov/ccshcn www.shrinershq.org/ choices Parent Transition Survey, HRTW-AZ, 2003. Self assessment of parent’s support for YSHCN in several areas: Education/Vocation; Health Management; Social Relationships & Communication; Independent Living; Money Management & Budget; Person Appearance & Hygiene; and Orientation & Mobility. Tool can be used over time to assess progress and identify areas for skill-building. (6 pages) [pdf] Youth Transition Survey, HRTW-AZ, 2003. Self assessment of parent’s support for YSHCN in several areas: Education/Vocation; General, Skills, Time Management; Knowledge; IEP; Health Management; Self-determination; Social Relationships & Communication; Independent Living; Social Relationships & Communication; Independent Living; Money Management & Budget; Social Security; Person Appearance & Hygiene; and Orientation & Mobility. Tool can be used over time to assess progress and identify areas for skill-building. (7 pages) [pdf] Key Transition Issues for Youth with Disabilities and Chronic Health Conditions, HRTW-ICHP, 2000. This paper describes recent changes in the SSI program affecting adolescents, what SSI work incentives are available to them, how they can maintain access to quality health care and benefits during their transition years, and key issues to consider during transition planning. It is the first of a series of working papers aimed at assisting service providers and families to ensure successful transitions to work and independence for youth with disabilities and chronic illnesses. [pdf] The Basics of Adolescent Transition for Youth with Special Health Care Needs, HRTW-WI, 2003. CD - This “CSHCN Wis Line” is an audio recording of a live presentation on a variety of topics related to transition in Wisconsin . Speakers share their information on transition from the following perspectives: Specialty clinic; Department of Public Instruction; Department of Health and Family Services, Division of Health; ABC for Health- a law advocacy firm; consumer; parent; and Guardianship Support Center. CONTACT: Beth Swedeen swedeen@waisman. wisc.edu Systematic Transition Plan, HRTW-AZ, 2003. The STP, modeled after the Individual Education Program (IEP) is completed by the youth and clinical care coordinator to identify short-term objectives and long-term goals necessary for transition to adulthood. [pdf] Fast Track Curriculum, HRTW-AZ, 2003. The Fast Track Curriculum includes modules to give youth the tools they need to transition to adulthood: Education, Vocation, Participatory Action Research and Social Skills. Curriculum for PAR: Printing Directions Cover Main Text Baseball Survey Stadium Letter Holiday Shopping Survey Holiday Shopping Survey Results Movie Survey Movie Survey Results Health Care Process Evaluation Survey Quality Indicators of an Effective Physician Physical Evironment Survey Informed Consent (Adults) Informed Consent (Minors) Masters/Overheads Growing Up Time - Important Ages! Key Information for IEPs and Benefits, HRTW-OH, 2001. 1-2 page handouts on when to take action on transition-related issues. [Word] [pdf] SURVEY - Transition Needs, HRTW-MS 2002. A questionnaire for distribution to youth with special health care needs in Mississippi to determine perceived transition needs and knowledge of their medical condition and preventive health care. CONTACT: Sam Gleese Phone: 1-800-748-9420 or 601-969-0601 Fax: 601-969-0656 Email: Marion Thomas - MThomas@jam.rr.com Sam Gleese - samgleese@earthlink.net Transition Steps into Adulthood Booklet, HRTW-MS 2002. A general information booklet containing contact information about activities of the HRTW project and other collaborative organizations. CONTACT: Sam Gleese Phone: 1-800-748-9420 or 601-969-0601 Fax: 601-969-0656 Email: Marion Thomas - MThomas@jam.rr.com Sam Gleese - samgleese@earthlink.net Transition Planning - Post-Secondary - After High School College Preparation Timeline, HRTW-KY, 2003. (click on Transition Resources on left side of page) chfs.ky.gov/ccshcn Paying for Education after High School, HRTW-KY, 2003. (click on Transition Resources on left side of page) chfs.ky.gov/ccshcn HEALTH & EDUCATION Health & School HRTW TIPS: No-Cost Ideas for Educators, HRTW National Center, 2004. Practical ideas and strategies to ensure that inclusive practices for YSHCN are implemented in the school setting. [word] [pdf] HRTW TOOL: Comparing IDEA, 504 and ADA, HRTW National Center, 2004. The Individuals with Disabilities Education Act (IDEA) reauthorized in 1997, Section 504 (§ 504) of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA) of 1990 are three laws that impact children and youth with disabilities. [word] [pdf] HRTW TIPS: Staying Healthy: For Youth and Teachers, HRTW National Center, 2003. Tips for Students and strategies for teacher to promote wellness, improve attendance and how to support missed school work. [word] [pdf] HRTW TIPS: Success at School Involves You School Meetings: Your Role in them Work, HRTW National Center , 2004. School meetings can be a drag — but they don’t have to be. Whether you are going to your child’s school for good news or for news that is not so good, there are things you can do to make this less stressful and more productive. Includes suggestions for health related accommodations in the classroom setting. [Word] [pdf] HEALTH & WORK Health & Work HRTW TIPS: Work & You: Your Special Health Care Needs in the Workplace, HRTW National Center, 2004. As a young person with special health care needs who is getting ready to apply for or start a new job, you will be better prepared to succeed by planning ahead. There is nothing better than cashing a paycheck! Your goals are to keep small problems small and to stay as well as you can. Issues to consider. [Word] [pdf]