The Florida Center for Inclusive Communities recognizes that good health is vital to enjoy all other life activities. People with developmental disabilities often have difficulty accessing appropriate high quality healthcare oftentimes because health care providers lack training or familiarity with the supports people with developmental disabilities need. FCIC is addressing this issue by undertaking activities that either a) educate health care providers to be sensitive to special health needs of people with disabilities, or b) assist individuals and their caregivers to be proactive about knowing and communicating their own health needs across their lifespan. FCIC's health activities are coordinated by Dr. Elizabeth Perkins.
Training Healthcare Providers
Medical Students
FCIC collaborates with the USF's Morsani College of Medicine to provide the innovative Health Care of Persons with Disabilities' Module. To our knowledge it is currently the only mandatory training in care of people with disabilities undertaken by medical students at any medical school nationwide. This ensures that all graduating medical students graduating from USF's Morsani College of Medicine now have clinical and community based experiences of people with disabilities. Dr. Perkins also provides guest lectures to graduate students in USF's College of Public Health, and School of Physical Therapy regarding health and health disparity issues.
Nursing Students
At Bethune Cookman University - L. Gale Lemerand School of Nursing: Since 2010, Dr. Perkins has provided an annual lecture to all BSN nursing students at the historically black Bethune Cookman University. This ensures that all nurses graduate having received some sensitivity education in caring for people with disabilities in a culturally competent manner.
Physicians
Florida Physician’s Education in Developmental Disabilities: Through a grant from Florida Developmental Disabilities Council, the American Academy of Developmental Medicine and Dentistry and the Florida Center for Inclusive Communities established the Florida Physician’s Education in Developmental Disabilities (PEDD) Consortium. PEDD developed a 12 CME credit-hour seminar series based on the first internationally vetted curriculum in developmental medicine created in the United States. This free webinar series, is focused on enhancing the practices and skills of primary care physicians and other healthcare professionals to provide better care to their adult patients with developmental disabilities. For more information, contact Dr. Elizabeth Perkins.
Nurse Practioners
Nurse Practitioner's Education in Developmental Disabilities: Through a grant from Florida Developmental Disabilities Council, the American Academy of Developmental Medicine and Dentistry offers a free 7 CE credit-hours seminar series approved by the American Association of Nurse Practitioners. This series is designed to enhance the practice skill of nurse practitioners and nurse practitioner students who would like to provide better care to their adult patients with developmental disabilities. For more information, contact Dr. Elizabeth Perkins.
Development of Health Materials
FCIC staff have developed materials to support effective communication of special health care needs and health promotion. These include My Health Passport - health advocacy document, and the BHIP (Be Healthy Information Program) range of health and wellness brochures. These can be found under the Materials & Resources tab.
FCIC Materials & Resources
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Medical professionals have very limited time to gather important information during medical appointments. FCIC’s My Health Report has been designed with feedback from family physicians to help individuals and family caregivers give relevant health information as efficiently as possible. By completing this information and sharing it with your doctor, it will help him/her determine why you are feeling sick. It also helps to free up more time for communication, and discussion of what treatment options are available to address your health issue. Dr. Liz Perkins would welcome any feedback or comments regarding My Health Report at eperkins@usf.edu. |
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My Health Passport - For Hospital and Clinic visits FCIC's My Health Passport is a health advocacy document that describes the unique supports and preferences of an individual. It is designed to be shared with many types of healthcare providers, in clinic and hospital settings, especially for those who are not very familiar in providing care to individuals with intellectual/developmental disabilities.
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Education for Lifelong Health Series Factsheets This series of factsheets were designed for people with mild intellectual disability. They can be used to help raise awareness about serious health conditions that become more common with increasing age. Usual treatments and prevention tips are also highlighted. Download each factsheet individually from the links below, or click on the complete series to download all five at once! Dr. Liz Perkins (eperkins@usf.edu) would welcome any feedback or comments regarding these factsheets.
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Education for Lifelong Mental Health Series Factsheets These factsheets were designed for people with mild intellectual disability to learn about mental health issues. They can also be a resource for mental health professionals, family caregivers, and support professionals to educate and raise awareness of mental health concerns. Usual treatment and strategies for maintaining mental health are highlighted. Future factsheets will feature coping with stress, grief. Dr. Liz Perkins (eperkins@usf.edu) and Dr. Natalie Romer (romer@usf.edu) would welcome any feedback. We also welcome any suggestions regarding other topics! |
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Physicians’ Fact Sheet Series This is a new series of factsheets aimed primarily at Physicians and other health professionals to have succinct information about a range of topics regarding care of adults with intellectual/developmental disabilities. Dr. Liz Perkins (eperkins@usf.edu) would welcome any feedback or comments or suggestions for topics. |
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BHIP Health & Wellness Brochures The FCIC has developed the BHIP (Be Healthy Information Program for Children and Adults with Disabilities) health and wellness brochures to provide individuals with developmental disabilities with important information about living a healthy life. All brochures are available to download as pdfs documents from the links below.
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Compound Caregivers: Overlooked and Overburdened (White Paper) Compound Caregivers: Overlooked and Overburdened is a white paper authored by Dr. Elizabeth Perkins regarding the challenges encountered by older caregivers of adults with intellectual disabilities when they also caregiving for other family members. The white paper is an attempt to alert policy makers and service providers alike of this emerging trend and offers recommendations for how to increase the availability of supports. |
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Sexuality & Developmental Disabilities Across the Lifespan The subject of sexuality can be daunting. Add to the mix a physical or cognitive disability and you may find yourself feeling totally unprepared to deal with the subject matter. Staff from the Florida Center for Inclusive Communities collaborated with the Florida Developmental Disabilities Council and the Center on Intellectual Disabilities at the University of Albany to create an easy to use workbook for families and educators of individuals with developmental disabilities. The Instructional Manual and the accompanying Resource Guides are designed to help educators and family members assist individuals with developmental disabilities in their exploration of self and sexuality.
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Other Useful Materials & Resources
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Health Access for Independent Living Factsheets The Health Access for Independent Living (HAIL) program has produced a range of resources designed for Centers for Independent Living staff to support their clients in setting and reaching health-related goals. Factsheets address important skills including: Goal Setting, Tracking Goals, Understanding Health Coverage, Managing Your Medications, Assistive Technology, Accessing Preventive Care, Organizing Your Health Records, and Working with Your Care Providers. Factsheets on secondary conditions are also available on Chronic Pain, Fatigue, and Depression. Links to all the factsheets are available on the right side of the HAIL webpage. . |
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A Guide for States: Coverage in the Medicaid Benefit for Children and Adolescents This guide, published by The U.S. Centers for Medicaid and Medicare Services (CMS) provides states, health care providers and others understand the scope of services that are covered under the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit. EPSDT is designed to ensure that children and adolescents receive appropriate preventive, dental, mental health, and developmental, and specialty services through their Medicaid programs. |
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The Office of Developmental Primary Care and Autistic Self Advocacy Network collaborated to produce this document. It outlines the perspectives of people with I/DD on their interactions with the health care system and articulates an agenda to reform the way health care services are delivered for people with intellectual and developmental disabilities (I/DD). This report was compiled based on feedback from focus groups conducted by People First of Washington State, Green Mountain Self Advocates and the Autistic Self Advocacy Network of Boston. |
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Affordable Care Act - What Disability Advocates Need to Know The Arc (link to Arc's main website http://www.thearc.org/) released this policy report to clearly describe the provisions of the Affordable Care Act (ACA). It is vital that the disability community understands the law and the many benefits it can provide to people with disabilities. View pdf document. |
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Stress and What You Can Do About It Stress and What You Can Do About It is a full color book that takes individuals with developmental disabilities through a colorful, graphically attractive and easy-to-read lesson in the basics of stress and stress management. Hard copies may be ordered online through the FDDC website. |
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Easing Your Stress – Information for Caregivers of Individuals with Developmental Disabilities An informative and user-friendly booklet that describes how to manage stress. Caregivers learn how the mind-body connect affects response to stress, how stress affects children, and how other caregivers have learned to ease their stress. It also describes what resources are available, and how caregivers can identify approaches that will work best for them. Hard copies may be ordered online through the FDDC website. |
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Health Insurance for Young Adults Just The Facts: The 411 on Health Insurance for Young Adults Ages 18-30 in Florida is designed to help all young adults - including those with chronic health conditions or disabilities - identify, access, and maintain health insurance coverage that meets their needs. To view the document or download a PDF version, click here. Resource provided by FloridaHATS. |
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A handbook for parents, family members and guardians of adults with developmental disabilities. Provides information that will help identify and plan the direction and future regarding the quality of life family members' desire. Personal information summary included to ensure the safety and happiness of a surviving family member with a disability. (2005) Resource provided by the Florida Developmental Disabilities Council. |
This page includes links to both internal (FCIC) and external (non-FCIC) websites. External links are selected and reviewed when the page is published. However, the FCIC is not responsible for the content of external websites. The FCIC website does not accept submissions or requests.
The National Disability Resource Collaborative
The National Disability Resource Collaborative is an initiative aimed at providing cross-disability information and support to Navigators and other enrollment specialists thereby ensuring people with disabilities receive accurate information when selecting and enrolling in insurance through the Affordable Care Act Marketplaces. The NDNRC website also has news, fact sheets, and other useful resources designed to support groups who are providing enrollment assistance to consumers with disabilities as they enroll for coverage through the ACA marketplaces.
Florida Office on Disability and Health
Florida was recently awarded a disability and health grant from the Centers for Disease Control and Prevention. This grant allowed for the creation of the, housed within the College of Public Health and Health Professions at the University of Florida The establishment of the Florida Office on Disability and Health (FODH) in Florida will facilitate the movement toward continuity in care for people with disabilities and their families, serving as a centralized location for designing, implementing, monitoring, and evaluating programs and services. A major aim of the FODH will be to generate epidemiologically sound and consistent data on disability and health, using both new and existing sources of data, so that disability and health-related public health policies and programs within the state are data-driven, evidence-based best practices.
Association on University Centers on Disabilities - Healthcare
AUCD works on all of the issues encompassed in the very broad term "health care" for people with disabilities. Specific emphasis is placed on a community rather than institutional bias in affordable, equal access to health care. This includes private health insurance, public programs such as Medicaid and Medicare, managed care, as well as quality assurance and consumer education protections
Florida Health and Transition Services (FloridaHATS) is a collaborative program of the Florida Department of Health, the Children’s Medical Services Network, the Florida Developmental Disabilities Council, and other partners throughout the state.
FloridaHATS’ mission is to ensure successful transition from pediatric to adult health care for all youth and young adults in Florida, including those with disabilities, chronic health conditions or other special health care needs.
Presenter(s): Nila Benito and Jackie Selbst
Date: October 14, 2011 Duration: 1 hr 25 min
Description: Parents and caregivers of children with intellectual and developmental disabilities (IDD) often have so much on their minds that teaching sexual health falls on the backburner. Unfortunately, lack of proper sexual health education may lead to grave dangers for those individuals, including sexual abuse or inappropriate sexual behaviors. This webinar includes studies, statistics, lessons learned, and teaching tips. Presenters: Nila Benito, FCIC Coordinator of Community Supports, and Jackie Selbst, USF second-year medical student. Moderator: Liz Perkins, FCIC Health Coordinator.
IMPORTANT! Please complete this 3 minute survey after you view the webinar.
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Communication of Health Care Needs
Presenter(s): Elizabeth Perkins, PhD, RNMH & Robyn Wallace, MD
Date: April 25, 2012Duration: 1 hr 31 min
Description: This webinar for the American Academy of Developmental Medicine and Dentistry (AADMD) features FCIC's Dr. Elizabeth Perkins. Her presentation covers the issues of poor communication and difficulties encountered when health care professionals are unfamiliar with providing care to people with intellectual and developmental disabilities especially in hospital settings. Her presentation describes FCIC’s training collaboration with Dr. Laurie Woodard and USF Health Morsani College of Medicine. Dr. Perkins also discusses the development, use, and dissemination of FCIC's My Health Passport. Co-presenting is Dr. Robyn Wallace, a physician from Tasmania (Australia). The webinar is moderated by Dr. Seth Keller, President of AADMD.
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Related Materials
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XCEL: Providing Excellent Care for Patients with Developmental Disabilities This companion factsheet to the XCEL training highlights the importance of communication training for DD in healthcare, as well as provides tips and links to additional resources. |
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My Health Report – For Regular Visits to Your Doctor Medical professionals have very limited time to gather important information during medical appointments. FCIC’s My Health Report has been designed with feedback from family physicians to help individuals and family caregivers give relevant health information as efficiently as possible. By completing this information and sharing it with your doctor, it will help him/her determine why you are feeling sick. It also helps to free up more time for communication, and discussion of what treatment options are available to address your health issue. |
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My Health Passport - For Hospital and Clinic visits FCIC's My Health Passport is a health advocacy document that describes the unique supports and preferences of an individual. It is designed to be shared with many types of healthcare providers, in clinic and hospital settings, especially for those who are not very familiar in providing care to individuals with intellectual/developmental disabilities. |
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Education for Lifelong Health: How Do I talk to My Doctor? This factsheet provides guidance on how to be better prepared for medical appointments. The Education for Lifelong Health series of factsheets are designed for people with mild intellectual disability to learn about health and wellness across the lifespan. The full series is available under the Material and Resources tab. |
Other Resources, Feedback & Comments
FCIC’s full range of free health-related resources are listed under the Materials and Resources tab. We welcome your feedback or comments regarding XCEL and FCIC’s health resources. Please contact Dr. Liz Perkins at eperkins@usf.edu.
Department of Child & Family Studies • College of Behavioral & Community Sciences • University of South Florida
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