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EDS Today is committed to helping connect people with EDS to the resources and support they need. This page provides a list of potential resources people with EDS may apply for. Special Thanks to volunteer Lana Christensen for compiling this list!
SOCIAL/HUMAN SERVICE AND COMMUNITY AGENCIESState Human Service Agency Info and Links UK Department of Health (contains links)
Roberts Review - A number of government and privately sponsored
programs that help patients financially. They are supported by voluntary
organizations, drug companies, hospitals, and corporations, and can help
reduce costs of services to cancer patients and their families by providing
everything from financial and housing help to transportation and medical
care (though it is listed for cancer patients, some of the links may be
helpful to others: Health Insurance Rights and Protections - For information on how to handle disputes with your health insurance company, or to review the consumer guidelines for your state, visit www.healthinsuranceinformation.net. Thanks to a grant from the Robert Wood Johnson Foundation, the Georgetown University Health Policy Institute has written A Consumer Guide for Getting and Keeping Health Insurance for each state and the District of Columbia. These Consumer Guides are available on their web site and are updated in accordance with changes in federal and state policy. The Patient Advocate Foundation - (www.patientadvocate.org or 866.512.3861) is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer, and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to their diagnosis. Professional case managers and attorneys specializing in mediation, negotiation, and education advocate on behalf of patients facing issues around access to care. They provide assistance with the insurance appeals process, access to medications, and expediting applications for Social Security Disability, Medicare, Medicaid, and other social programs. The Internet Public Library - Informational links on Social Work; work intended to advance the social conditions of a community, and especially of the disadvantaged, by providing psychological counseling, guidance, and assistance, especially in the form of social services. Alliance for Technology Access (ATA) - The Alliance for Technology Access (ATA) is a network of community-based Resource Centers, Developers, Vendors and Associates dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies. ATA Members can be found all across the country. We hope that this web site will let you get to know us a little better, make use of our resources, contact one of our members and perhaps consider joining us in achieving our mission of "connecting children and adults with disabilities to technology tools." United States Department of Health and Human Services - Information and Links to diseases and conditions, families & children, aging, wellness, food and drug, resource locators and more.
National United
Way - 800.411.UWAY (8929) Many local United Way agencies operate an
information and referral service (often called First Call for Help, or
Helpline) that lists a wide variety of local services. Some of these are
listed in the Helping Hand Resource Database; some have online searchable
databases of their own. United Way may know of local charities and
philanthropic organizations that can provide financial assistance. Call them
or visit their website to locate your local United Way. National Accessible Apartment Clearinghouse - By pairing Americans with disablities with accessible apartments for rent/lease, NAAC has assisted many people with disablities to live independently. In an average week, NAAC receives 100 requests from potential renters. NAAC's database covers more than 155 major metropolitan cities and areas. Information about NAAC regularly appears in "Units", "Wheelchair Access & News", "For Rent Magazine", "Disablity Rights" and "Kiplingers". Protection & Advocacy, Inc. (PAI) - "Advancing the human and legal rights of people with disabilities." Legal or advocacy questions: 1-800-776-5746 TOLL FREE Administration: 916-488-9955. This site has a wealth of resources for fighting discrimination against the disabled and getting access to needed services. (last checked August 2004) Eldercare Locator, a public service of the U.S. Administration on Aging - The Eldercare Locator connects older Americans and their caregivers with sources of information on senior services. The service links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers. You may find the information resources you need by following the directions below or you may speak to an Eldercare Locator information specialist by calling 1-800-677-1116. These offices can help you find resources specific to older people such as meals programs, practical assistance, long term care, respite care, and mental health services. United States Department of Justice ADA page - United States Equal Employment Opportunity Commission ADA page: http://www.eeoc.gov/facts/fs-ada.html Links to individual state sites’ governmental benefits
Medical Emergencies Without Insurance - How to Get the Help You Need
Without Going Into Debt The Hill-Burton Act - The Hill-Burton Act authorizes assistance to public and other nonprofit medical facilities such as acute care general hospitals, special hospitals, nursing homes, public health centers, and rehabilitation facilities.
ISafetyNet.US - The Health and Human Services Web
Navigator:Community, Health and Social Services A database of many different
health and human services. Modest Needs - Modest Needs is a tax exempt, grass-roots charitable organization dedicated to the proposition that no request for help is insignificant. DCU StreetWise - StreetWise's goal is to simplify your search for reliable information on a variety of useful topics, such as Associations and advocacy groups, accessible housing, assistive technology, travel, American Association of People with Disabilities and more. Direct and Indirect Financial Support for Families
HELP WITH TRANSPORTATIONOffice of Rare Diseases - Links to charitable or special fare flights to research and treatment sites, a nationwide directory of hospital hospitality houses for patients and families, and fee-for-service ambulance services – from the Office of Rare Diseases website. CancerCare’s website listing of transportation assistance links - Call 1-800-296-1217. This phone line is staffed 24 hours/day, 365 days a year. A list of medical travel sites in the USA, also lists travel resources by state. (last checked May 2004) A comprehensive list of free medical flights "The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. This site will introduce you to us and to all the groups we list whose volunteers perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service. " "Angel
Flight provides, through its members, access for people in need
seeking free air transportation to specialized health care facilities or
distant destinations due to family, community or national crisis." Corp Angel Network - free use of empty spaces on corporate jets for children going for cancer treatments. Mercy Medical - helping those in need of medical transit. Miracle Flights for Kids - Free flights for medical emergencies. Dreamline - flights for medical or vacation trips for families of seriously ill children. Lifeline Pilots - Uses small private air crafts for free flights for medical emergencies and other compelling needs. Miracle Flights - Flights for children with medical needs.
Mercy
Medical Airlift - Charitable air transportation in situations
of compelling human need. AirLifeLine - AirLifeLine is a national nonprofit charitable organization of over 1,500 private pilots who fly ambulatory patients who cannot afford the cost of travel to medical facilities for diagnosis and treatment. All pilots donate their time, aircraft, and fuel to make this air transportation service totally free of charge for patients who qualify. 5775 Wayzata Boulevard, Suite 700, Minneapolis, MN 55416 Telephone: (877) 727-7728 Or 50 Fullerton Court, Suite 200, Sacramento, CA 95825, Telephone: (877) AIRLIFE (877-247-5433) Delta Airlines SkyWish Program - This program uses donated frequent flyer miles to help children and adults with life-threatening illnesses and injuries travel to get the help they need. Telephone: (703) 519-0092 Fax: (703) 519-0097 National Patient
Travel Center - The National Patient Travel Center (NPTC)
facilitates patient access to appropriate charitable medical air
transportation resources in the United States. The National Patient Travel
HELPLINE provides information about all forms of charitable, long-distance
medical air transportation and provides referrals to all appropriate sources
of help available through the Angel Flight America Network. For patients who
are able to travel in light aircraft and who are traveling less than 1,000
miles, a private or corporate aircraft flown by a volunteer pilot will be
the likely source of travel. Longer travel may be accommodated through one
or more of the many donated airline ticket or reduced-rate airline ticket
programs. c/o Mercy Medical Airlift, 4620 Haygood Road, Suite 1 DreamLine, Inc - DreamLine, Inc., recognizes that a child’s health depends not just on proper medical treatment but on overall wellness; the organization also recognizes that a child’s illness often creates an enormous financial burden for the family. DreamLine seeks to help seriously ill children and their families by providing transportation so that children can go on vacation, visit friends or family, or travel for emergency medical treatment. 117 North Merril Street, Park Ridge, IL 60068 Telephone: (847) 910-3940 (urgent calls only, please) Fax: (520) 563-6437 (primary fax) or (847) 384-0690 (home fax) Northwest Airlines KidCares - Northwest Airlines uses donated frequent flyer miles to provide free air travel to children age 18 and younger who must travel to receive medical treatment. Telephone: (612) 726-4206
Search
the Mobility International USA - (last checked April 2004)
Easter Seals Project
ACTION - Accessible Community
Transportation In Our Nation (ACTION) " Funded through a cooperative
agreement with the U.S. Department of Transportation, Federal Transportation
Administration, Easter Seals Project ACTION promotes cooperation between the
transportation industry and the disability community to increase mobility
for people with disabilities under the ADA and beyond. They offer various
resources, as well as training and technical assistance." Wishes and Rainbows - Links to apply for programs that can help you with SS disability issues, purchase of medicine, grants to help with bills and other needs. TRAVEL FUNDS FOR CONFERENCESSome state Developmental Disability Councils offer scholarships to self-advocates for conferences related to their disabilities IRS Ruling about Deduction for Disability Related Conferences - In May of this year, the IRS issued Revenue Ruling 2000-24, which offers guidance (and good news) for parents of children with disabilities who attend conferences to obtain medical information that may be useful concerning treatment for and care of their children. Under this Revenue Ruling, reproduced below, individuals may deduct some of the costs of attendance at a medical conference relating to a dependent’s chronic health condition. HELP WITH MEDICATIONSNeedy Meds.com - This site is designed to provide information about patient assistance programs which provide no cost prescription medications to eligible participant: Needy Meds: www.needymeds.com 215.625.9609 - Needy Meds provides information about patient assistance programs and other programs designed to help those who can't afford their medicines. Please note that this is not a program – it is only an information source. If a particular drug has been prescribed for you, it may be worth checking the pharmaceutical company that produces that drug regarding their patient assistance program. AARP’s list of links to State-by-state, Plan-by-plan, pharmacy assistance programs http://www.familyvillage.wisc.edu/hospital/meds.htm http://kspope.com/medications/index.php https://www.helpingpatients.org/Intro.php http://www.stretcher.com/stories/00/000103b.cfm UnitedMedHelp - UnitedMedHelp exists to help people in the United States apply for or enroll in patient assistance programs. We require the cooperation of the applicant's physician. POSSIBLE SOURCES OF COVERAGE FOR PRESCRIPTIONS The Free Med Connection (Canada) Patient Assistance & Medication Rebate Programs (Canada) ASSISTANCE WITH LODGINGMake sure that you call and arrange accommodations as far ahead as possible in case these facilities have limited space. Many lodges will request that the residents help with routine house cleaning and care, if at all possible: American Cancer Society - some US communities have a 'Hope Lodge' sponsored by the ACS. You can search by zip code on this page.
Ronald McDonald House/British Columbia - Beautiful 3 story house has 14 bedrooms and a unique greenhouse-style children's playroom.
Fisher House - offers patient housing facilities for military forces, veterans, and their families receiving care at military medical centers.
National Assoc. of Hospitality Houses Inc.- serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies.
Ronald McDonald House - provides a “home-away-from-home” for families of seriously ill children who are receiving treatment at nearby hospitals.
Ronald McDonald House/Australia - a "home away from home" for the families of seriously ill children being treated at nearby hospitals.
Ronald McDonald House/Clayton, Victoria - a special residential facility that serves as a home away from home for the parents and families of children being treated for serious illnesses.
Ronald McDonald House/London, Ontario - a short-term residential facility where families of seriously ill children can reside while their children receive medical treatment.
Ronald McDonald House/Canada - provides a "home-away-from-home" for families of seriously ill children receiving hospital treatment. Ronald McDonald House/Saskatchewan - for families who come to Saskatoon to obtain medical care not available in their home communities. National Association of Hospital Hospitality Houses, Inc. - The National Association of Hospital Hospitality Houses (NAHHH) is a nonprofit corporation established to serve facilities that provide lodging and other supportive services to patients and their families when medical care requires out-of-town travel. Each facility ensures that a homelike environment is provided to people who must travel to be with a patient or to receive necessary outpatient care. NAHHH members/houses offer inexpensive accommodations during hospitalizations, before and after surgery, and during repeated visits; the cost is usually $5 to $15 (or sometimes free). The NAHHH maintains information on all known facilities offering accommodations to people during medical treatment away from home. A directory is updated regularly and published annually. Call the toll-free hospitality hotline or log on to the Web site for free information on NAHHH members. P.O. Box 1808,7 Asheville, NC 28814 Telephone: (800) 542-9730 Fax: (828) 253-8082 Bravekids - for resource type Lodging Away From Home ASSISTIVE PRODUCTSDoodads, Gadgets, and Thingamajigs Web Directory for Assistive products & related Source for Information on Assistive Technology PATIENT ADVOCACY AND PAIN INFORMATION SOURCESPatient Advocate Foundation - Patient Advocate Foundation seeks to empower patients to take control of their health care. Case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs. Patients are Powerful - This Patients Are Powerful website is designed to walk you through the varied steps to patient empowerment. Most popular are our online printable sample letters to help you challenge your HMO for better care. You can "Request a Copy of YOUR Medical Records", "Request to See a Specialist", "Get a Second Opinion", "Choose Your Hospital", and "Get the Right Prescription Medication". Additionally, we can help with our HMO "Not Medically Necessary" or "Not a Covered Benefit" challenge sample letters. Finally, Patients Are Powerful provides Free Legal Advice in all areas of medical malpractice and a special "Injured at Work" link among our many services. International Alliance of Patients’ Organizations Different medical/pain websites that offer information and help Links to other websites regarding pain INFORMATION ABOUT HIPAAHIPAA stands for Health Insurance Portability and Accountability Act. It sets standards for the privacy of medical records and the ability to carry your health insurance from one insurer to the next. Answers to frequently asked questions about HIPAA from the US health and human services. The Health Privacy Project - Find out the most recent privacy information, how to file a claim, and about state and privacy laws federal laws. Information about HIPAA for researchers - This site has many links about consent forms. Center For Disease Prevention and Control information on HIPAA Information about how HIPAA protects health insurance coverage HIPAA link for Medicare and Medicaid services Some helpful conference proceedings View videos about HIPAA including HIPAA basics and how to file a claim More info: (866) 282-0659 HIPAA Hotline. Send email to: askHIPAA@cms.hhs.gov ASSISTANCE WITH INSURANCECircle Solutions - For low-cost primary health care, a local community health center may be able to help. Visit www.circlesolutions.com/pc to find a health center near you. Health Insurance Info Net - Questions about getting and keeping health insurance: The Institute for Health Care Research and Policy at Georgetown University offers state-by-state consumer guides that summarize medical rights and protections. Visit www.healthinsuranceinfo.net to learn more about the protections in your state. Families USA - Assistance with getting needed medical services paid by a health plan providing coverage: Families USA offers links to ombudsman programs across the country that counsel people with both private and public health coverage who have experienced difficulty getting the care they believe they need. Visit www.familiesusa.org/hap/index_links.htm to find counsel in your area. Ways to lower prescription drug costs for consumers on fixed income: To find information about programs offering free prescription medicines to the disabled and qualified low-income individuals, visit www.disabilityresources.org/RX.html. You can learn about patient assistance programs and other programs designed to help those who can't afford their medicines at www.needymeds.com. Health care providers can find out about pharmaceutical companies' patient assistance programs that provide prescription drugs free or at a minimal charge at www.rxassist.org Resources from Pediatric Oncology Resource Center (not all are for cancer only) MISCELLANEOUSOrganizations/Services that provide a wide range of services or categories not covered elsewhere ... http://www.prayer-warriors.org/general_help.htm
The Christopher and Dana Reeve Paralysis Resource Center - Hospital Christian Fellowship - A wide variety of links to Christian Healing Ministries and other organizations related to Hospital Christian Fellowship and health services CHILDREN'S CHARITIES OF AMERICA MEMBER ORGANIZATIONS I Hate My Life - You can find free and low cost nationwide health care by clicking here. UK Links to helpful organizations Winged Fellowship Trust - Winged Fellowship Trust is a national charity providing holidays for disabled and visually impaired people and breaks for carers. OTHER SITES OF INTERESTDirectory of Digestive Diseases Organizations for Patients Resource Directory Other Health Conditions: Organizations A "gateway" website for health The Reflex Sympathetic Dystrophy Syndrome Association website GETTING THE MOST FROM A SERVICE: WHAT TO ASKNo matter what type of help you are looking for, the only way to find resources to fit your needs is to ask the right questions. When you are calling an organization for information, it is important to think about what questions you are going to ask before you call. Many people find it helpful to write out their questions in advance, and to take notes during the call. Another good tip is to ask the name of the person with whom you are speaking in case you have followup questions. Below are some of the questions you may want to consider if you are calling or visiting a new agency and want to learn about how they can help:
The most important thing to remember is that
you will rarely receive help unless you ask for it. In fact, asking can be
the hardest part of getting help. Don’t be afraid or ashamed to ask for
assistance.
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