National Resources for Parents of Children and Adolescents with Medically Fragile Conditions

The American Academy of Pediatrics (AAP) is committed to the attainment of optimal, physical, mental, and social health and well being of all infants, children, adolescents, and young adults. This web site has a wealth of information for parents and physicians both. http://www.aap.org/

Disability.gov offers parents and guardians of special needs/children with medically fragile conditions a wealth of important resources. It is a new federal government website that provides a community-driven information network of disability-related programs, services, laws and benefits. http://www.disability.gov/

Easter Seals Day Programs for Young Adults Center-based adult day services and programming “for individuals 18 and older with a physical disability or social or cognitive impairment who need some assistance with activities of daily living (bathing, dressing, and eating).” http://www.easterseals.com/site/PageServer?pagename=ntl_adult_and_senior_services_younger

Medically Fragile Families Network:  The purpose of this group by Parent to Parent of NYS is to disseminate and share information regarding children who have complex medical needs, are considered medically fragile and require skilled nursing care.  This e-group is a place where parents can connect and support each other by posting questions, sharing resources, comments and stories.  It is interactive, and parents are able to receive feedback from other parents across New York State. http://www.parenttoparentnys.org/Forms/joinmedfragilegroup.htm

Medical Home Portal is a web site originally for the state of Utah but expanded nationally that offers reliable and comprehensive information on the “medical home”—the partnership between the physician (pediatrician) and the individual with special needs and his/her family to ensure that the medical and non-medical needs of the child/youth are met. http://www.medicalhomeportal.org/medical-home

National Center for Medical Home Implementation has a New York State page that identifies State partners, public policy and legislations. http://www.medicalhomeinfo.org/

Disability Advocacy Groups

Council for Disability Awareness: The site offers tools and information to help wage-earners, employers, human resource professionals, families, financial and insurance advisors make informed decisions about planning for the financial impact of disability. http://www.disabilitycanhappen.org/resources/default.asp

Disability Information and Resources  A list of web sites to access a wide range of medical and disability related products, assistive technology and travel related web sites. http://www.makoa.org/index.htm

National Organization on Disability (NOD)  National advocacy organization that promotes full participation of America’s 54 million people of all ages with disabilities in all aspects of life. http://www.nod.org/

TASH:  National advocacy organization promoting equity, opportunity and inclusion for people with disabilities. http://tash.org/