Health Care
National Health Care Information Resources
To locate Health Care Services in your community, click here to search the Pathfinder database. On the database search page, select your county and "Health Care Services" then click on "Search."
Behavioral Resources
The Behavior Analyst Certification Board offers a "search by zip code" reference to find certificants in your area.
The Tennessee Association for Behavior Analysis aims to advance awareness, development, and access to the practice of behavior analysis in the state of Tennessee.
Dental Care
All children, especially those with special health care needs, should see a Pediatric Dentist for their first dental visit by 12 months of age. Children with special needs between the ages of one and twelve years, depending on the type of practice, can be seen as new patients in most pediatric dentistry offices. Patients with special needs ages 12 and older can be seen as new patients in some General Dentistry offices, especially those with advanced training in General Practice Residencies and Hospital Dentistry. Others are followed by Hospital Dental Programs with emphasis on Hospital Dentistry. Courtesy of Dr. Edwin Turner, former professor and director of pediatric dentistry at Vanderbilt University.
American Academy of Developmental Medicine and Dentistry
Mission is to improve the overall health of individuals with Neurodevelopmental Disorders and/or Intellectual Disabilities (ND/ID).
Dentistry for the Disabled Child and Adults
Provides information on finding a good dentist for your disabled child/adult, levels of anesthesia to control behavior, tooth brushing for disabled people, Bruxism (grinding of teeth), and educational materials.
National Foundation of Dentistry for the Handicapped
A national charitable organization dedicated to meeting the needs of citizens with physical, medical, and mental disabilities.
Practical Oral Care for People With Developmental Disabilities
Sponsored by the National Institute of Dental and Craniofacial Research, this website provides information on the physical, mental, and behavioral challenges common in patients with speical needs and offers strategies for providing oral care.
Special Care: An Oral Health Professional’s Guide to Serving Young Children with Special Health Care Needs
Free web-based continuing education course designed for oral health professionals (dentists, dental hygienists, and dental assistants). Prepared by the National Maternal and Child Oral Health Resource Center at Georgetown University and designed by the Center for Advanced Distance Education at the University of Illinois at Chicago with support from the MCHB. CE credits available.
Special Care Dentistry Association
Organization whose mission is to promote the oral health of special needs patients. They also provide a number of conference papers/articles on special needs dentistry. SCD is currently comprised of dental health professionals who are part of the component organizations:
American Association of Hospital Dentists (AAHD) - Hospital based dental professionals
American Society for Geriatric Dentistry (ASGD) - Dental professionals who treat geriatric, homebound and cognitively impaired adults
Academy of Dentistry for Persons with Disabilities (ADPD) - Dental professionals who treat physically challenged individuals.
End of Life Care
The National Hospice and Palliative Care Organization represents U.S. hospice and palliative care programs. Hospice care involves a team-oriented approach of expert medical care, pain management, and emotional and spiritual support. The care is guided by a patient's wishes. Care also is given to the family and loved ones. Generally, this care is given in the patient's home or in a home-like setting run by a hospice program. Medicare, private health insurance, and Medicaid in most states cover hospice care for patients who meet certain criteria. Click here to link to NHPCO’s Find a Hospice Program page which allows you to search by city and state.
Reproductive Health and Sexuality Education
The American Academy of Pediatrics (AAP) offers fact sheets on sexuality, including tips on talking to young children about sexuality.
“Breast Health Access for Women with Disabilities” is a community partnership of women with disabilities, breast cancer survivors, medical professionals, and grassroots disability rights organizations
Disability Services ASAP (A Safety Awareness Program), a Texas program, has an extensive Resource List of materials on disability and sexuality, abuse, and violence prevention.
The Eric Clearinghouse on Disabilities and Gifted Education (ERIC EC) offers information on sex education and students with disabilities.
Family Village has a Sexuality and Disabilities page that includes tips on how to talk about sexuality with young people with disabilities. A Disability and Sexual Orientation page focuses on people with disabilities who are gay, lesbian, bisexual, or transgender (GLBT).
"Healthy Relationships and Safe Sex Tips for Self Advocates" (PDF) is a handbook available for self-advocates that discusses healthy friendships, romantic relationships, and safe sex. This handbook is written by Joe Meadours, an accomplished self-advocate from Alabama. It sells for $15.
The Junior League Family Resource Center at Vanderbilt Children's Hospital offers books, videos, and other resources regarding sexuality and disability. Their library catalog also lists relevant websites.
NICHY Connections, a web resource page of the National Dissemination Center for Children with Disabilities, lists sources of information on sexuality education for young people with disabilities.
The Pacer Center's "Project Youth - Health Resources" includes publications on sexuality.
Parents with Disabilities Online offers The Parenting Book for Persons with a Disability and more.
Planned Parenthood provides information about sexuality education for people with disabilities. Contact a local Planned Parenthood program or visit the Planned Parenthood website for a list of resources.
Sexuality Education for Children and Youth with Disabilities, published by The National Center for Information on Children and Youth with Disabilities.
The Sexuality Information and Education Council of the United States (SIECUS) offers an annotated bibliography on sexuality and disability.
Table Manners and Beyond: The Gynecological Exam for Women with Developmental Disabilities and Other Functional Disabilities” provides useful information about pelvic and breast examines including how to reduce stress. It also provides information for midwives, birth control, midlife issues and has a sample questionnaire.
Ten Tips for Talking About Sexuality with Your Child Who Has Developmental Disabilities by Lisa Maurer, MS, CFLE, ACSE, Consultant and Trainer.
Home Health Care
The National Association for Home Care offers an Agency Locator and advice on how to choose a home care provider.
Policy and Advocacy Resources
The Arc of the U.S.
Institute for Child Health Policy: Includes research on organization and financing of care for children and youth with special health care needs.
Kaiser Health Information Network: A free daily on-line information service for the health policy community, the news media, and the general public.
National Academy for State Health Policy
NHeLP National Health Law Program: Working for justice in helath care for low income individuals and families.
National Institutes of Health
National Association of Insurance Commissioners: Helps consumers with access to state insurance regulators and important consumer information.
National Survey of Children with Special Health Care Needs: From the National Center for Health Statistics (NCHS)
Women's Health Care Resources
Center for Research on Women with Disabilities provides links to information on health care for women with disabilities. It includes links to reproductive health maintenance for women with disabilities, research and studies on women with disabilities, health and wellness for women with disabilities, access to health care for women with disabilities, abuse and women with disabilities, community living, and educational materials.
National Center for Education in Maternal and Child Health
Division of Services for Children with Special Health Care Needs: Maternal and Child Health Bureau
Knowledge Paths: Topics related to maternal and child health.
"Table Manners and Beyond: The Gynecological Exam for Women with Developmental Disabilities and Other Functional Disabilities" provides useful information about pelvic and breast exams, including how to reduce stress. It also provides information for midwives, birth control, midlife issues and has a sample questionnaire
U.S. Department of Health and Human Services: Provides link to health resources for people with disabilities.
The following organizations offer general information on health care:
American Academy of Pediatrics
American Health Lawyers Association
An educational organization devoted to legal issues in the healthcare field. Its Publication Information Series of publications includes guides to Medicaid, legal issues in lime-limiting conditions, emergency preparation and response and more.
Association of University Centers on Disabilities
Bright Futures offers a practical developmental approach to providing health supervision for children of all ages.
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Child Nett.tv is a unique internet web channel dedicated to Autism and other neurological disorders.
Community Health Care Center includes medical, health, transportation, therapeutic and supportive resources
Consortium for Children and Youth with Disabilities and Special Health Care Needs works to improve rehabilitation outcomes for children and youth with disabilities and special health care needs.
Data Resource Center for Child and Adolescent Health
Developmental Disabilities Research Centers
DisAbility.Gov Health includes children, general resources, long-term services and supports, managed care, Medicare and Medicaid, minorities, mental health, private health insurance, specific health conditions and disabilities, substance abuse, women, veterans, and your health care rights.
DisabilityInfo.gov offers information on health care services and programs available through the federal government.
Division of Services for Children with Special Health Care Needs
FamiliesUSA is "the voice for health care consumers."
Family Voices works on behalf of children with specific health care needs.
Healia is a health service engine developed by the National Institutes on Health (NIH).
Health and Wellness Consortium provides health information and resources for people with disabilities.
Health Care Transition for Youth with Disabilities and Special Needs: An e-mail Special Interest Group to exchange of ideas and information. It is for health professionals, youth and their family members, policy makers, insurers, and others. Members share knowledge and experience in the transition of youth from child-centered (pediatric) to adult-oriented health care. To join, send a blank e-mail message to Join-transition@list.ichpt.edu
Healthfinder provides information about health topics, diseases and conditions, health care, and more.
Health Issues and Developmental Disabilities, a collection of resources from the Boling Center for Developmental Disabilities.
Healthy & Ready to Work is a national project that helps young people with special health care needs understand their health needs and participate in their health care decision-making.
Institute for Child Health Policy
Institute for Family-Centered Care promotes leadership to advance the practice of family centered care. This is a good resource for policy makers, administrators, program planners, direct service providers, educators, and family members.
KidsHealth is for parents, kids, and teens from the medical experts of the Nemours Foundation.
Knowledge Paths offers topics related to maternal and child health.
Children with Special Health Care Needs
National Association of Children's Hospitals and Related Institutions provides a search resource to help families find hospitals in their area or with specific programs and services.
National Rehabilitation Information Center (NAIRC)
National Center for Education in Maternal and Child Health
National Resource Center for Traumatic Brain Injury provides information for professionals, persons with brain injury, and family members.
National Center on Birth Defects and Developmental Disabilities
Pediatric Development and Behavior provides better care and outcomes for children and families affected by developmental, learning, and behavioral problems by providing access to clinically relevant information and educational materials for physicians, fellows, residential physicians, and students. The site may also be of interest to psychologists, nurses, nurse practitionaers, social workers, therapists, educators and parents.