Health Resources

Below are resources, organizations and tools regarding health promotion and individuals with intellectual disabilities. Some materials are written by other organizations and professionals and therefore, do not necessarily reflect the opinions of the HealthMeet project or The Arc of The United States. Every effort is made to provide accurate and current information. However, due to updating cycles and the nature of the resources offered, some errors or outdated information may occur. Users of this website have the responsibility to verify the accuracy, currency and completeness of the information contained. If any outdated information is noticed please inform us at mauger@thearc.org.

THE ARC’S HEALTH BLOG ARTICLES

2014

2013

2012

ACHIEVA'S HEALTH NEWSLETTER

ADOLESCENTS

Healthy Transitions – Provides tools, videos, and documents to help teach skills and supply information for moving from pediatric to adult Health care. Developed by NY State Institute for Health Transition Training, has audio for non-readers and assessable in Spanish.

Healthy Bodies: A Parent's Guide on Puberty for Adolescents With Disabilities – This toolkit was developed to help support an adolescent with a disability going through puberty.  It is appropriate for a broad range of disabilities and provides a variety of visual supports and social stories that deal simply and directly with the practical matters of puberty.  There is a misperception that children with disabilities will also be delayed in puberty and the development of their sexuality - which isn't necessary the truth. By empowering adolescents with an understanding of their bodies it will help reduce anxiety in difficult situations and increase independence. There are both male and female toolkits.

This toolkit was developed by Vanderbilt University Assistant Professor of Pediatrics Cassandra Newsom, Psy.D., and trainees in the Vanderbilt Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Training Program. It has been produced and is being disseminated by the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.

Health Care Transitions Initiative - This initiative was created by the University of Florida to share resources, increase awareness and help promote efforts to make the transition from pediatric to adult health care easier.  They strive to improve the transition process through research, networking and product development.

Planning for a Healthy Transition: A Family Planning Guide - This guide, developed by Washington State Department of Health Children with Special Health Care Needs (CSHCN), is to help parents start thinking about health care transition and creating a health care transition plan for a smooth successful process.

AGING

eMAS – Web-based medical alert system. It helps keep track of medications, identifies potential drug reactions and can alert your health care provider with details from reports.

American Geriatrics Society Updated Beers Criteria for Potentially Inappropriate Medication Use in Older Adults

Instruments for the Assessment of Dementia Among People with Intellectual Disabilities – Information regarding where to order dementia assessment documents for individuals with ID.

5 Wishes – Booklets written in simple everyday language help to start and structure those important conversations and hard to ask questions. Resources are provided that help voice the individuals end-of-life wishes, how you’d like to be treated, who should make your health care decisions, etc.

Aging and Down Syndrome – A health & well-being guidebook to common conditions and issues faced in adulthood and later in life.

CDC's Healthy Aging - Provides information on issues impacting individuals as they age. 

DIABETES

A Snapshot: Diabetes in the United States - CDC fact sheet regarding data, related health issues, and prevention methods for developing Type 2 Diabetes.

2014 CDC National Diabetes Statistics Report – Scientific data and statistics on diabetes and its burden in the United States.

FLU

Flu Prevention Flyer – Flyer that can be posted to remind individuals about the steps they can take to help prevent the flu this season.

FLU.gov - Information regarding everything you need to know about the flu and the flu vaccine.

GENERAL RESOURCES

Administration for Community Living - Website with information about how to deal with worrying behaviors.  Funded by the Administration on Intellectual and Developmental Disabilities (AIDD)

CDC Disability and Health - Information for family caregivers to help them and those they care for stay safe and healthy.

Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation: Report of the Surgeon General's Conference on Health Disparities and Mental Retardation, 2002: This national Blueprint drew the attention of the Nation to the longstanding health disparities experienced by people with intellectual disabilities and identified goals and action steps for improving their health.  The Blueprint  took the essential first steps needed to bring together self-advocates with intellectual disabilities and their families with the scientists, health care providers, professional training institutions, advocacy organizations, and policymakers who can make a difference in the lives of individuals with intellectual disabilities.

Florida Center For Inclusive Communities - Materials and resources to help self-advocates and health professionals learn more about effective communication of health care needs and health promotion.

Public Health is for Everyone - An inclusive online planning toolkit to increase the capacity of public health professionals to create programs that benefit entire communities, including people who have disabilities.

Where in Health is Disability? Public Health Practices to Include People with Disabilities. This session of the Centers for Disease Control and Prevention’s (CDC) Public Health Grand Rounds webcast focuses on disability and health. The work of NCBDDD’s Division of Human Development and Disability and its network of partners will present data on health differences and risk factors of poor health in individuals with disabilities, demonstrate physical activity programs implemented by CDC’s Arthritis program and reveal best practices for the inclusion of disability in national public health organizations.

Wyoming Family to Family Health Information Center - online portal to high-quality, research-based information on improving the health your family and children with special health care needs.

HEALTHCARE

A Blind Spot in the System: Health Care for People with Developmental Disabilities: This report presents findings from in-depth key informant interviews with 20 health care providers and representatives of county health departments, county health plans, and community-based organizations. Stakeholders identified a number of barriers to health care for adolescents and adults with developmental disabilities and made a number of recommendations with regard to improving health care access and quality of care.

Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts
This report from the Arc of Massachusetts focuses on the health care issues faced by those with intellectual and developmental disabilities and covers a variety of subjects, ranging from knowledge to health care access.

Person First Health – ACHIEVA (The Arc of Greater Pittsburgh) recently launched a brand new website under their Disability Healthcare Initiative that provides resources and information for individuals with disabilities, families, medical professionals and others interested in healthcare for people with disabilities. As the healthcare of people with disabilities and chronic medical issues becomes more of a focus for healthcare professionals and policy makers, it is important that all stakeholders have available current information and resources. This site was developed to meet that need and provide a comprehensive reference to increase healthcare access and promote the health and wellness for people with disabilities.

Planning for a Healthy Transition: A Family Planning Guide - This guide, developed by Washington State Department of Health Children with Special Health Care Needs (CSHCN), is to help parents start thinking about health care transition and creating a health care transition plan for a smooth successful process.

Healthcare for Adults with I/DD – Toolkit of best practice tools for primary care providers.

Tips for Healthcare Professionals - Nicole LeBlanc of Self Advocates Becoming Empowered (SABE) discusses various tips for healthcare professionals in working with people with autism and other developmental disabilities.

Healthcare Related Issues for Individuals with Disabilities - This webinar features 3 speakers from the APHA Disability Section. The moderator for this session is Dr. Willi Horner-Johnson. The first two speakers, Victoria Stoneman and Sarah Long, focus on their research regarding specific standards of care for adults with ID and the relation to hospital-acquired infections to reduce the numbers of infections and improve overall care. The second half of the webinar features Lisa Voltolina’s research on examining the experiences of parents of children with Autism in obtaining a medical diagnosis. Many parents report a negative experience due to inconsistent information and many barriers with professionals and communication issues.

The State Medicaid Integration Tracker© - published each month by the National Association of States United for Aging and Disabilities (NASUAD).

CDC State Disability and Health Programs - Programs that ensure individuals with disabilities are included in ongoing state disease prevention, health promotion, and emergency response activities.

HEALTH REPORTS

Disability and Health in the United States, 2001-2005: This Report from the CDC examines health-related differences between disabled and non-disabled non-institutionalized adults aged 18 years and over including education, income, and employment, health status, health risk factors, access to care and clinical preventive services.

The Current State of Health Care for People with Disabilities: This report from the National Council on Disability identified a broad range of recommendations for reforms that are required to address some of the most significant obstacles to health, health care, and disease prevention and health promotion for people with disabilities. Recommendations are directed to key stakeholders, including Congress and the Administration, accreditation and professional medical organizations, states, and non-Federal organizations concerned with disability, health, and health care policy and research.

The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities: This report describes the particular challenges to health and well­being faced by persons of all ages with disabilities and emphasizes that health and wellness is a key component to equal opportunity, workforce engagement and full access into daily community life for people with disabilities.

Rural disparities in receipt of colorectal cancer screening among adults ages 50–64 with disabilities: Study done to determine whether urban/rural disparities in colorectal cancer screening exist among people with disabilities, similar to the disparities found in the general population.

MENTAL HEALTH

Intellectual Disability Mental Health First Aid Manual 2nd Edition - The purpose of this manual is to provide guidance on how to support people with an intellectual disability who are experiencing difficulties associated with mental health problems. There is also information in the manual that will help those with little or no experience interacting with someone who has an intellectual disability.

NUTRITION

CDC Nutrition Resource Center - Online resource center providing a host of tools to helping to improve knowledge and access to affordable healthy foods.

Good Nutrition Is a Key to Health - The National Resource Center on Nutrition & Aging presents an hour long presentation during March’s National Nutrition Month featuring Kathy Greenlee, the Assistant Secretary for Aging with the Department of Health and Human Services.  Ms.Greenlee discusses the importance of good nutrition in healthy aging to maintain independent living in the elderly.  She also provides her thoughts on the future sustainability of senior nutrition services as part of the larger aging network.

OBESITY / EXERCISE

CDC Resource Center on Physical Activity - Online resource center providing a host of tools to helping to encourage physically active lifestyles.

CDC Resource Center on Obesity - Online resource center providing a host of tools to help reduce obestity rates.

The National Center on Health, Physical Activity and Disability (NCHPAD) has a 14 Week Health Promotion Program - a free, personalized, web-based physical activity and nutrition program for people with disabilities.

The Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD), HealthMatters™ CAP has collaborations between community-based organizations and academic institutions to support people with developmental disabilities (DD) in our communities throughout the lifespan. HealthMatters™ CAP engages community partners to find practical solutions to improve health through a variety of training, research, and service learning initiatives, including the HealthMatters™ Train the Trainer Program - an evidence-based 6-hour training that provides structured information on how to organize and start a tailored physical activity and health education program for people with intellectual and/or developmental disabilities (I/DD).

CDC Health Weight Issue Briefs - considerations that people and organizations can do to help combat obesity among people with disabilities. Briefs include obesity prevention in the workplace and schools, Health Dept Strategies, and Healthcare professionals accessibility.

CDC Vital Signs: Adults with Disabilities, Physical Activity is For Everybody - Data regarding physical activity levels of individuals with disabilities and resources to help encourage activity.

Fetal Alcohol Spectrum Disorders Lead To Excessive Weight Gain And Obesity Later In Life 

ORAL HEALTH

Oral Healthcare for Children with Developmental Disabilities - This clinical report from the American Academy of Pediatrics describes the effect that poor oral health has on children with developmental disabilities as well as the importance of partnerships between the pediatric medical and dental homes. It also provides a basic overview of the oral health risk factors affecting children with developmental disabilities.

Special Care Dentistry Association - Resources and helpful information regarding oral health care for patients with special needs. 

ORGANIZATIONS

American Association on Health and Disability: (AAHD) The mission of AAHD is to contribute to national, state, and local efforts to prevent additional health complications in people with disabilities, and to identify effective intervention strategies to reduce the incidence of secondary conditions and the health disparities between people with disabilities and the general population.

Centers for Disease Control and Prevention: (CDC) The Centers for Disease Control and Prevention’sstate-based disability and health programs inform policy and practice at the state level. These programs ensure that individuals with disabilities are included in ongoing state disease prevention, health promotion, and emergency response activities. CDC supports 18 state-based programs to promote equity in health, prevent chronic disease, and increase the quality of life for people with disabilities. Each program customizes its activities to meet its state’s needs, which broadens expertise and information sharing among states.

Disability.gov - Find health information/resources by different search criteria, such as national and state/local resources, health related topic areas, types of disabilities or audience type.

National Center on Health, Physical Activity and Disability: (NCHPAD) is positioned to effect change in health promotion/obesity management among people with disabilities through its existing 13-year history of providing advocacy, services and programs to numerous organizations and people throughout the country. The primary focus of the Center’s approach is to collaborate with the nation’s leading health advocacy and disability organizations in linking them to the hundreds of program initiatives ongoing across the nation, and using this framework to build inclusion and integration into these existing programs.

Rehabilitation Research and Training Center on Aging with Developmental Disabilities Lifespan Health and Function (RRTCADD): As persons with intellectual and developmental disabilities are living longer and their presence in the community increases there is a growing need for information on ways to support these adults and their families. The RRTCADD seeks to enhance the health, function, and full community participation of adults with intellectual and developmental disabilities (I/DD) across the lifespan and bolster family caregiving capacity through a coordinated set of research, training in evidence-based practice, and dissemination activities.

TECHNOLOGY

Familylink is a unique technology that monitors in-home motion and uses a simple easy-to-use interface to connect families to their loved ones.  It gives you, your family and caregivers the peace of mind that your loved one is safe when you are not around.  It allows for your loved one to live independently while still being able to be easily connected at any time through simplified tools on the touch screen display. Through built-in motion detectors located in the room, Familylink can track activity levels in each room and set notification alerts that will be triggered based on the user’s normal routine.

SeizureTracker.com - Innovative website with comprehensive tools that allow you to track seizure activity to help understand the relationship between seizures and anti-epileptic medications. Reports can be created and used as valuable communication tools with doctors.

TOBACCO

CDC Resource Center on Tobacco Prevention - Online resource center providing a host of tools to helping to reduce tobacco use and esposure to secondhand smoke.

Disparities in Cigarette Smoking among Adults wtih Disabilities - Report from the CDC revealing the prevalence of cigarette smoking in adults with disabilities broken down by state.  Specific state smoking cessation programs are highlighted along with linkages to resources for other state-based programs and tips for quitting.

Smoking and Tobacco Use - Tobacco use is the leading preventable cause of death in the United States killing almost 1 in every 5 adults each year. The Centers for Disease Control and Prevention’s (CDC) Smoking and Tobacco page provides programs on how to successfully quit smoking, cessation materials, fact sheets, and links to local resources. They provide data and statistics on the percentage of individuals with an intellectual or developmental disability who smoke compared those individuals without a disability.

I can Quit - Guidebook to help facilitate tobacco cessation program for individuals with disabilities. Created by Monish University in Australia.

WOMEN’S HEALTH

Access to Healthcare for Women & Girls with Disabilities - This report from one of The Arc’s Chapters and HealthMeet pilot sites, Achieva, is a review of the findings of why women with disabilities have difficulty accessing healthcare.  It focuses on 4 main categories 1. Lack of accessible equipment, 2. Communication barriers, 3. Financial barriers, 4. Shortage of providers.  In order for women to receive quality healthcare it needs to be accessible and respectful.  Solutions are presented at the end for ways to help improve this process in Pennsylvania and throughout the U.S. for all women and girls with disabilities.

Being A Healthy Woman This is a online book to help women with intellectual disabilities learn more about their health. It also provides a list of resources for women with intellectual disabilities, their family members, care givers or health care professionals. It can be used as a teaching tool to help women with intellectual disabilities learn about their health.

Women Be Healthy - Provides information about health care for women with IDD. You'll find information about breast and cervical cancer screenings, HPV, and how to talk with your nurse or doctor.