RESOURCES and LINKS for patients and families
The following information about these resources has been provided to AOSW by CancerCare and their 'Helping Hand' resource book. We are grateful for their assistance.
ENTITLEMENTS ORGANIZATIONS
Independent Living Centers
These are private, nonprofit agencies that provide services to maximize the independence of individuals with disabilities. Primary services include: disability rights advocacy, peer support, resource information and referral, housing advocacy, independent living skills consultation and government benefits information and advocacy.
Social Security Administration
800-772-1213
Pays retirement, disability and survivors benefits to workers and their families and administers the Supplemental Security Income program.
Click here for SSD info
Click here for SSI info
FINANCIAL RESOURCES
Catholic Charities
State directory of local agencies
Lifeline
Link provides state specific info. Lifeline reimburses telephone companies for discounting consumers’ monthly phone bills. Suspension or shutoff can be postponed for 30 days if client cannot pay bill and anyone in household is ill and may need telephone service to call for an emergency medical assistance, as long as your doctor or local Board of Health notifies the utility. After the 30 days are up, further extensions may be granted, as long as your doctor or local Board of Health certifies that the condition still exists and you show that you still cannot pay the bill.
United Way
Search for local office by zip code
HOSPICE RESOURCES
National Hospice and Palliative Care Organization (NHPCO)
800-658-8898
Can search for a local hospice provider. Website provides educational materials.
INSURANCE
Bureau of Primary Health Service
Can search for facilities providing primary care to underserved populations.
Georgetown University Health Policy Institute
Georgetown University Health Policy Institute has written “A CONSUMER GUIDE FOR GETTING AND KEEPING HEALTH INSURANCE” for each state and the District of Columbia. Outlines options for clients in a comprehensive guide.
Patient Advocate Foundation
866-512-3861
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to medical care, maintenance of employment and preservation of financial stability.
LEGAL ASSISTANCE
American Bar Association
National directory of pro bono programs
LawHelp.org
LawHelp helps low and moderate income people find free legal aid programs in their communities, and answers to questions about their legal rights. Able to search by zip code for legal assistance for many different issues.
MEDICARE - FINDING INFORMATION ABOUT MEDICARE
Making decisions about Medicare coverage can feel overwhelming. The following websites are designed to give impartial information to help you make a more educated choice that fits your needs. If you are undergoing cancer treatment or caregiving for someone with cancer, you might also ask your treatment center's oncology social worker for assistance.
1. State Health Insurance Assistance Program (SHIP)
A national program that offers counseling and assistance to people with Medicare and their families. To find the SHIP that services your area, you can use the SEARCH on medicare.gov:
http://www.medicare.gov/contacts/organization-search-criteria.aspx
or the SHIPtalk website:
https://www.shiptalk.org/Public/home.aspx?ReturnUrl=%2fdefault.aspx
2. Kaiser Health News, Open Enrollment Questions
http://www.kaiserhealthnews.org/Stories/2010/November/10/Michelle-Andrews-questions.aspx
3. 2011 Medicare Handbook
http://www.medicare.gov/Publications/Pubs/pdf/10050.pdf
4. Medicare's 8 things you should know when choosing/changing your policy
http://www.medicare.gov/new-to-medicare/choosing-or-changing-coverage.aspx
5. Center for Medicare & Medicaid toolkit site
http://www.cms.gov/center/openenrollment.asp (see "My Medicare Tools" on right hand side)
PAIN MANAGEMENT RESOURCES
The American Pain Foundation
888-615-PAIN
Mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.
PRESCRIPTION ASSISTANCE
NeedyMeds.com
Site contains the latest, most accurate information on pharmaceutical assistance programs available.
Partnership for Prescription Assistance
888-477-2669
Mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through this site, the Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.
RxAssist.org
Click on “Search Programs” button to find information on patient assistance programs.
OTHER CO-PAY ASSISTANCE PROGRAMS
Check the websites for eligibility – funding is for specific conditions and is limited.
Healthwell Foundation
800-675-8416
Addresses the needs of individuals who cannot afford their insurance copayments, premiums, coinsurance, or other out-of-pocket health care costs.
Patient Access Network Foundation
866-316-7263
Assists patients with specific conditions who cannot access the treatments they need due to out-of-pocket health care costs including deductibles, copayments, and coinsurance.
Patient Advocate Foundationﾒs Co-Pay Relief Program
866-512-3861
Provides direct co-payment assistance for pharmaceutical products to insured patients (including Medicare Part D beneficiaries) who financially and medically qualify.
Patient Services Incorporated (PSI)
800-366-7741
Assists patients with chronic medical illnesses in accessing health insurance (COBRA) and pharmacy co-payment assistance.
SUPPORT GROUPS/COUNSELING
American Psychosocial Oncology Society
866-276-7443
Offers a toll-free hot line for cancer patients and advocacy organizations to obtain referrals for local counseling and support services throughout the United States. The referral program aims to connect patients or patient advocacy organizations to psychiatrists, psychologists, nurses, and social workers skilled in the management of cancer-related distress. The helpline voice-mail is monitored three times each business day. An APOS member will call within two business days to assist with a referral. Also offers an online directory.
CancerCare
800-813-HOPE
National nonprofit organization that provides free professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones and the bereaved. Programs - including counseling, education, financial assistance and practical help - are provided by trained oncology social workers and are completely free of charge.
Lance Armstrong Foundation LIVESTRONG SurvivorCare
LIVESTRONG SurvivorCare is the Lance Armstrong Foundation's one-on-one support program through which cancer survivors can get counseling and referrals to local resources, address financial, insurance and employment issues and connect to new treatments in development. To speak to a case manager, call LIVESTRONG SurvivorCare toll-free at 866.235.7205 or visit www.livestrong.org/survivorcare to submit a request for help online.
SURVIVORSHIP
Lance Armstrong Foundation
Through the Lance Armstrong Foundation's online education resource at www.LIVESTRONG.org/CancerSupport, cancer survivors can learn about their cancer-related concerns, such as the physical and emotional effects of cancer and its treatment and managing day-to-day matters. In addition, survivors can download worksheets to organize and guide their cancer experiences and hear stories shared by other cancer survivors.
The National Coalition for Cancer Survivorship
877-NCCS-YES
Is the oldest survivor-led cancer advocacy organization in the country and a highly respected authentic voice at the federal level, advocating for quality cancer care for all Americans and empowering cancer survivors. Click here for information on the Cancer Survival Toolbox.
Resource information about Integrative, Complementary and Alternative Medicine (CAM) cancer treatments (PDF)
Resource information - phone and Internet - for Cancer Survivors applying Integrative Healthcare Practices (PDF)
TRANSPORTATION AND LODGING
Joe’s House
877-563-7468
The mission of Joe’s House is to be a housing resource for cancer patients and their families who must travel away from home for medical treatment. As such we have designed a site that lists cancer treatment centers and lodging facilities.
National Association of Hospital Hospitality Houses
800-542-9730
Association of more than 150 nonprofit organizations located throughout the U.S. that provide lodging and support services to families and their loved ones who are receiving medical treatment far from their home communities.
National Patient Travel Helpline
800-296-1217
Patients often use this HELPLINE to learn how they can obtain travel help for repeated trips back and forth to distant specialized care. Patients may make multiple trips and there is no age limit. Physician will be asked to sign a form indicating that the travel is for essential and necessary medical care.
DISCLAIMER: AOSW makes no representations or warranties, expressed or implied. Providing references to other organizations or links to other websites does not imply that AOSW endorses the information or services provided by them. Those organizations are solely responsible for the information they provide.
Please feel free to email info@aosw.org with changes, comments, or suggestions.
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