RESOURCE LINKS
CAREGIVING, ILLNESS & GRIEF SUPPORT
Alliance of Grandparents, a Support in Tragedy
Administration on Aging (AoA), Dept. of Health & Human Services
Educates older people and their caregivers about available benefits and services, including referral and outreach efforts at the community level.
For list of State Units on Aging (SUA):
www.aoa.gov/eldfam/How_To_Find/Agencies/Agencies.asp
ALS Association, MA Chapter
www.als-ma.org
Please contact to make a donation to: "The Peter & Terry Wise ALS Fund"
ALS Association, National Office
www.alsa.org
The ALS Digest
Free weekly e-mail newsletter with over 5,100 subscribers from more than 70 countries. Subscribers share experiences, thoughts, helpful information and tips.
www.alslinks.com/currentdigest.htm
ALS Family Charitable Foundation, Inc.
www.alsfamily.org
ALS Links - Internet Portal
Internet portal for ALS patients and caregivers. Compilation of resources includes foundations, internet forums, assistive resources, medical support.
ALS Care
A comprehensive website of resources for home healthcare issues. Materials to train and organize caregivers and health professionals.
ALS Therapy Development Foundation
www.als-tdf.org
Alzheimer’s Association
Nationwide network of local chapters that provide support, education, and practical programs for individuals and families dealing with Alzheimer's.
Alzheimer's Disease Demonstration Grants to States (ADDGS) Programs
Search for ADDGS grant programs by state (click “State Contacts") and contact the state's Project Director. Grants for diagnostic and support services for persons with Alzheimer’s disease or related disorders, their families, and their caregivers. Administered by Administration on Aging, U.S. Dept of Health & Human Services.
www.aoa.gov/alz/public/alzabout/aoa_fact_sheet.asp
AlzWell
Prevention of caregiver burnout.
American Academy of Bereavement
www.bereavementacademy.org
American Academy of Home Care Physicians
Nationwide listing of physicians who perform house calls.
American Cancer Society
Resources and support programs for patients and survivors.
Association of Death Education Counseling
Information for those suffering from loss of a loved one, grief management.
www.adec.org
Befrienders International
Has a directory of suicide hotlines and crisis centers worldwide.
BookShare.org
Provides online access to books that have been scanned for people with mobility limitations that interfere with holding or turning pages, people who are blind or have severe visual impairments, people with learning disabilities such as dyslexia, and other print disabled individuals.
Camp Forget-Me-Not (The Wendt Center)
Free weekend sleep-away bereavement camp for area youth ages 6-15 who have experienced the death of a loved one.
www.wendtcenter.org/services/camp.htm
CareGuide
Caring Today Magazine
Resources and advice for family caregivers on the issues faced when providing care for family and/or aging parents.
The Center for Hospice & Palliative Care
The Centering Corporation (and Grief Digest Magazine)
Education and resources for the bereaved.
Christopher Reeve Paralysis Foundation
CJ Foundation for SIDS
The Comfort of Home
The Educated Caregiver video series, Trainer’s Presentation Kits, Mini-Guides for care-giving.
The Compassionate Friends
Curt's Pitch for ALS
http://www.curtspitch.org/curt/
DyingWell
Resources for people facing life-limiting illness, families & professional caregivers.
Resources and tips about various subjects, including illnesses, mental health, fitness and wellness.
eHope Foundation
Helps create and organize free, non-medical, day-to-day, physical, social and emotional support networks for people with life-threatening illnesses and their caregivers. Once the "network" is formed, a website is set up for each ill person with lists of what needs to be done, who has agreed to do them, contact info, and info about the person's condition.
Eldercare Locator
U.S. Administration on Aging service that provides a directory for elders and caregivers to locate support.
Elizabeth Kubler-Ross Foundation
Empowering Caregivers
www.care-givers.com
Faith in Action
Nationwide interfaith care-giving program that makes grants to local groups who volunteer to work together to care for their neighbors who have long-term health needs. Active in nearly all 50 states & zip code entry is available on their website.
FamilyCareAmerica
Has a “resource locator” by zip codes (e.g. care management, medical services, financial planners, assisted living, nursing, and care facilities). Information for caregivers of the chronically ill, disabled, and elderly.
Family Caregiver Alliance
Helps families and caregivers of adults with neurological disorders and diseases. Includes online support group and caregiver consultation.
Good Grief Program
Training, consultation, and crisis intervention in the area of children's bereavement (sibling bereavement, chronic illness of a family member, adolescent suicide,etc.)
www.bmc.org/pediatrics/special/GoodGrief/overview.html
Good Grief Resources
Bereavement, loss and grief resources.
GriefNet
Internet community of persons dealing with grief, death, and major loss. A companion site, KIDSAID, provides a safe environment for kids and their parents to find information and ask questions.
Grief Resources
Crisis & healing resources.
Growth House, Inc.
Internet portal to international resources for life-threatening illness and end-of-life care. Their mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration.
Hole in the Wall Camps
Free camps for children with serious illnesses and life threatening conditions.
Founded by actor Paul Newman.
Hospice Foundation of America
Hospice Net
www.HospiceNet.org/html/caregivers.html
Innovations in End-of-Life Care
International, on-line journal features peer-reviewed practices in end-of-life care, useful tools, selected bibliographies, and other resources.
www.edc.org/lastacts
International Alliance of ALS/MND Associations
A group of more than 50 patient support and advocacy groups worldwide.
Lance Armstrong Foundation
Living Will Registry
A service to store and access living wills.
Last Acts
National crisis & information hotline (1-800-989-9455) dealing with end-of-life issues and provides state-specific living wills and medical powers of attorney (e.g. Advance Directives). Free downloads of Living Wills & Medical Power of Attorney Documents.
Make-A-Wish Foundation
Grants wishes of children with life-threatening medical conditions.
Michael J. Fox Foundation for Parkinson’s Research
Muscular Dystrophy Association
Partnership between scientists and citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.
National Academy of Elder Law Attorneys (Elder Law Attorney Locator)
Information, education, networking and assistance to lawyers, bar organizations and others who provide legal services to older clients and their families, and people with special needs.
National Adult Day Services Association
Directory and guides for selecting adult day centers.
National Alliance for Caregiving
Provides support to family caregivers and professionals.
National Association of Area Agencies on Aging (N4A)
655 area agencies on aging (AAAs). Coordinates & supports home and community-based services, referral, home-delivered meals, transportation, employment services, senior centers, adult day care and long-term care ombudsman program.
http://www.n4a.org/aboutaaas.cfm
National Association of State Units on Aging (SUA)
Represents the nation's 56 state and territorial agencies on aging to advance the needs of aging populations, adults with disabilities and their families. Map of U.S. to click on each state.
www.nasua.org/SUAMembers.cfm#tx
National Association of Social Workers (NASW)
National Association of Social Workers Foundation (NASWF)
Administers programs to enhance well-being of individuals, families & communities.
http://www.naswfoundation.org/programs.asp
National Center for Death Education
An educational center dedicated to promoting knowledge and understanding in the field of Thanatology. On-site and on-line continuing education programs on death and grief.
www.mountida.edu/sp.cfm?pageid=307
National Family Caregivers Association
Grassroots organization to empower, educate, support, and speak up for the millions of Americans who care for a chronically ill, aged, or disabled loved ones.
National Family Caregiver Support Program (NFCSP)
Resources for families, caregivers, and professionals. Includes Caregiver Tips and Fact Sheets, Financial Steps Sheets, state facts at a glance, studies, NFCSP State Contacts.
National Hospice & Palliative Care Organization (NHPCO)
National Long Term Care Ombudsmen Resource Center
Advocates for residents of nursing homes and assisted living. Information to find facilities and address complaints. Searchable by state.
www.ltcombudsman.org/static_pages/ombudsmen.cfm
National Multiple Sclerosis Society
Resources include literature explaining The American with Disabilities Act, press room with breaking news on scientific advances, and a comprehensive PDF file sourcebook with information on symptoms and treatments.
National Organization for Rare Disorders (NORD)
Resources include database of more than 1,100 diseases and organizations, FDA orphan products designations and approvals, organizational database for support groups.
National Partnership for Women and Families
Promotes fairness in the workplace, access to quality affordable healthcare, and policies that help women and men meet the dual demands of work and family.
National Respite Locator Service
A service to help caregivers and professionals find respite services in their state or local area. This might be useful for caregivers and patients who plan to travel or move out of state.
Partnership for Caring
Publications to assist individuals with decision making about end-of-life care and treatment and provides state-specific advance directives.
Pet Loss Support
State-by-state lists of support groups, counselors, hotlines, pet cemeteries, and links to organizations and resources for pet loss support and services.
Promoting Excellence in End-of-life Care
Dedicated to long-term changes to improve health care for dying persons & families.
Robert Wood Johnson Foundation
www.rwjf.org
Ronald McDonald House Charities
Provides a "home away from home" for families of seriously ill children receiving treatment at nearby hospitals.
Share the Care
www.sharethecare.org
Spastic Parapalegia Foundation, Inc. (SPF)
Dedicated to finding cures for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS), and to provide information and support services.
Today's Caregiver Magazine On-Line
Caregiver Media Group provides information, support and guidance for family and professional caregivers. Includes topic-specific newsletters, on-line discussion lists, and chat rooms.
Visiting Nurse Associations of America (VNAA)
Home health organization that provides compassionate, quality and cost-effective home care. Search for VNAs by state.
Well Spouse Foundation
Provides support to wives, husbands & partners of the chronically ill and disabled.
Whispering Hope Ranch
Offers children and families with physical or developmental challenges a Ranch-style retreat with programs to foster interactions with animals who have physical limitations or were abandoned or mistreated. Bereavement, cerebral palsy, cancer, muscular dystrophy, craniofacial conditions, developmental disabiities, autism, epilepsy, AIDS, colitis, homelessness, etc.
DEPRESSION SUPPORT
Depression and Bipolar Support Alliance
www.DBSAlliance.org
The Depression Center
Families for Depression Awareness
A national organization that helps families recognize and cope with depressive disorders with the goals of easing their pain and suffering and preventing suicides.
www.FamilyAware.org
Mental Health Services Locator
Search by state (by clicking on map of U.S.) to find lists of mental health services and directories, resource guides, and other mental health related programs.
http://mentalhealth.samhsa.gov/databases/
National Alliance on Mental Illness (NAMI)
www.nami.org
National Council for Community Behavioral Healthcare
Membership of 1,300 behavioral healthcare organizations that provide treatment & rehabilitation for mental illnesses and addictions disorders.
National Foundation for Depressive Illness, Inc.
Lists suicide hotlines by state and country.
National Institute of Mental Health (NIMH)
All publications are free and may be copied without permission.
www.nimh.nih.gov/nimhhome/index.cfm
National Mental Health Information Center
www.mentalhealth.org
Real Men, Real Depression Campaign - NIMH
http://menanddepression.nimh.nih.gov/
Support Partners Program
www.SupportPartnersProgram.com
Web MD - Depression Health Center
CHILD ABUSE PREVENTION
International Society for Prevention of Child Abuse & Neglect
www.ispcan.org
National Council on Child Abuse and Family Violence
Kol Isha - Jewish Domestic Violence Program, Jewish Family & Children's Service
Partnership to Prevent Child Sexual Abuse
Prevent Child Abuse America
www.PreventChildAbuse.org
Stop It Now!
www.StopItNow.com
SUICIDE PREVENTION
American Association of Suicidology (AAS)
Provides extensive resources, training, education and support to professionals, survivors, and those at-risk for suicide. Hosts comprehensive annual conference, as well as ongoing training curricula nationwide.
www.suicidology.org
Also see:
- Media Guidelines:
http://library.sprc.org/browse.php?catid=4
- School Suicide Prevention Accreditation Program: www.suicidology.org/web/guest/certification-programs/school-professionals
- Recognizing and Responding to Suicide Risk: www.suicidology.org/web/guest/education-and-training/rrsr
American Foundation for Suicide Prevention (AFSP)
www.afsp.org
Advancing Suicide Prevention
National bi-monthly magazine that covers issues, trends and state-of-the-science on suicide prevention from diverse perspectives.
www.advancingsp.com
ASIST Program (Applied Suicide Intervention Skills Training)
Livingworks Education, Inc.
Canadian Association for Suicide Prevention (CASP)
www.suicideprevention.ca
European Network for Suicidology
www.uke.uni-hamburg.de/ens
International Association for Suicide Prevention (IASP)
www.med.uio.no/iasp
The Link’s National Resource Center for Suicide Prevention and Aftercare
MA Coalition for Suicide Prevention
Media Relations Locator
Search by zip code, state, or name to identify local and national media outlets (newspapers, magazines, radio & television) and reporters who may be engaged in raising awareness about suicide prevention and mental health issues.
http://capwiz.com/spanusa/dbq/media
Mental Health Services Locator
Search by state (by clicking on map of U.S.) to find lists of mental health services and directories, resource guides, and other mental health related programs.
http://mentalhealth.samhsa.gov/databases/
Metanoia
National Council for Suicide Prevention
National Organization for People of Color Against Suicide (NOPCAS)
www.nopcas.com
National Strategy for Suicide Prevention (SAMHSA, CDC, NIH, HRSA, HIS)
www.mentalhealth.samhsa.gov/suicideprevention
National Suicide Prevention Lifeline, 800-273-TALK (8255)
Provides immediate assistance to individuals in suicidal crisis by connecting them to the nearest available suicide prevention and mental health service provider through a toll-free telephone number. Funded by the Federal Government.
www.suicidepreventionlifeline.org
QPR Institute
Safe & Effective Messaging and Reporting for Suicide Prevention
(Suicide Prevention Resource Center)
Evidenced-based recommendations for safe reporting to raise public awareness that suicide is a preventable public health issue. Includes recommendations to assist reporters and editors in safe reporting on suicide.
www.sprc.org/library/at_a_glance.pdf
www.sprc.org/library/SafeMessagingfinal.pdf
Signs of Suicide (SOS)
Suicide Awareness Voices of Education (SAVE)
A national non-profit agency working to prevent suicide and educate about brain illnesses through public awareness campaigns, education and professional training.
Suicide Prevention Resource Center
Prevention support, training & resources to assist organizations and individuals to develop suicide prevention programs, interventions and policies.
www.sprc.org
Suicide Prevention Action Network USA (SPAN USA)
www.spanusa.org
Support Groups & Survivor Resources and Referrals
Click on state to see listings of local support groups.
www.suicidology.org/displaycommon.cfm?an=1&subarticlenbr=55
Resource and referral information for survivors.
www.suicidology.org/displaycommon.cfm?an=6
Surgeon General's Call To Action To Prevent Suicide 1999
David Satcher, M.D., Ph.D.
www.mentalhealth.samhsa.gov/suicideprevention/calltoaction.asp
For pdf version:
www.mentalhealth.samhsa.gov/media/ken/pdf/suicideprevention/calltoaction.pdf
The Trevor Project
A nationwide, around-the-clock crisis and suicide prevention helpline for lesbian, gay, bisexual, transgender and questioning youth.
Yellow Ribbion International Suicide Prevention Program
SUICIDE PREVENTION - YOUTH & COLLEGE
American Association of Suicidology (AAS)
Provides extensive resources, training, education and support to professionals, survivors, and those at-risk for suicide. Hosts comprehensive annual conference, as well as ongoing training curricula nationwide.
www.suicidology.org
Also see:
- Media Guidelines:
http://library.sprc.org/browse.php?catid=4
- School Suicide Prevention Accreditation Program: www.suicidology.org/web/guest/certification-programs/school-professionals
Campus Blues
Columbia University TeenScreen Program
Go Ask Alice!
Framework for Developing Institutional Protocols for the Acutely Distressed
or Suicidal College Student
www.jedfoundation.org/framework.php
Guidelines for School-Based Suicide Prevention Programs
www.suicidology.org/associations/1045/files/School guidelines.pdf
The Jason Foundation
The Jed Foundation
National Association of School Psychologists
National College Health Assessment (American College Health Association)
www.acha.org/projects_programs/assessment.cfm
National Suicide Prevention Lifeline, 800-273-TALK (8255)
Provides immediate assistance to individuals in suicidal crisis by connecting them to the nearest available suicide prevention and mental health service provider through a toll-free telephone number. Funded by the Federal Government.
www.suicidepreventionlifeline.org
ULifeline
The White Paper:
Promoting Mental Health and Preventing Suicide in College and University Settings
www.sprc.org/library/college_sp_whitepaper.pdf
Youth Suicide Prevention Intervention and Postvention Guidelines: A Resource for School Personnel
http://mainegov-images.informe.org/suicide/docs/guidelines02.pdf
The Youth Suicide Prevention School-Based Guide
SUICIDE HOTLINES & CRISIS CENTERS
Befrienders Worldwide
CrisisLink
www.crisislink.org
National Suicide Prevention Lifeline, 800-273-TALK (8255)
Provides immediate assistance to individuals in suicidal crisis by connecting them to the nearest available suicide prevention and mental health service provider through a toll-free telephone number. Funded by the Federal Government.
www.suicidepreventionlifeline.org
The Samaritans, 877-870-HOPE (4673), 617-247-0220, 508-875-4500
Free, confidential 24-hour phone befriending line. Referrals to local sites.
Samariteens - Teen Helpline, 800-252-TEEN (8336)
Free, confidential help line for assisting teens in despair. Staffed by teenage volunteers who are trained to be compassionate & supportive listeners.
www.samaritanshope.org/samariteens.html
Find a Suicidal Helpline Near You (Crisis Helplines around the World)
Access to suicide and crisis helplines in over 40 countries and 10 languages.
www.suicide-helplines.org/index.html
BENEFITS & PRESCRIPTION DRUG ASSISTANCE
Access to Benefits Coalition
Information for people having trouble paying for prescription drugs.
www.accesstobenefits.org/default.aspx
Benefit Eligibility Screening Tool (B.E.S.T.)
Tool to learn if you qualify for benefits offered by the Social Security Administration (e.g. Disability, Medicare, Survivor benefits, Prescription Drug Assistance)
Drug Digest
Consumer health & drug information to help consumers make informed choices about drugs & treatment options (drug library, interactions, comparisons).
FamiliesUSA
Information on prescription drugs programs.
www.familiesusa.org/issues/prescription-drugs
Also includes information and advice for those who have private insurance. www.familiesusa.org/issues/private-insurance
Grants.gov
Information on over 1,000 grant programs and approx. $400 billion in annually awarded Federal grants.
GovBenefits.gov
Searches for State and Federal Government benefits programs by “Life Event” (e.g. needing benefits because of retirement, becoming sick or disabled, death of a loved one, becoming a parent, affected by a natural disaster, losing a job, etc.) and by “Category” (e.g. Social Security Disability Benefits, Medicaid, Veterans Prescriptions Services, etc.). Includes map of U.S. to click on each state.
www.govbenefits.gov/govbenefits_en.portal
Lilly Cares Foundation (Eli Lilly), Patient Assistance Programs
Donates free medication to patients and agencies worldwide.
http://www.lilly.com/responsibility/servingpatients/programs/
Medicare
U.S. Government site that provides information to people with Medicare.
Medicare Access for Patients-Rx (MAPRx)
Coalition of patient, family caregiver & health professional organizations to assist patients with chronic diseases and disabilities.
Mental Health Services Locator
Search by state (by clicking on map of U.S.) to find lists of mental health services and directories, resource guides, and other mental health related programs.
http://mentalhealth.samhsa.gov/databases/
National Council on Aging "BenefitsCheckUp"
Helps people age 55 and over find programs that may pay for some of their costs of prescription drugs, health care, utilities, and other items and services. A National Council of The Aging service.
National Organization for Rare Disorders (NORD)
Medical Assistance Program assists uninsured or under-insured individuals in securing life-saving or life-sustaining medications. Eligible programs & medications are listed.
www.rarediseases.org/programs/medication
Partnership for Prescription Assistance
Assists patients without prescription coverage to obtain medications (information on 475 patient assistance programs & 150 pharmaceutical company programs).
Pharmaceutical Research and Manufacturers Association (PhRMA)
Directory of prescription drug patient assistance programs.
Senior Health Insurance Information Program (SHIP)
Information on counselors nationwide who provide free one-on-one help with Medicare. SHIP counselors are listed by state.
www.medicare.gov/contacts/static/allStateContacts.asp
Social Security Online – Help with Prescription Drug Costs
SSA resources and other programs that assist with prescriptive drugs costs.
www.socialsecurity.gov/prescriptionhelp
Tools for helping with Medicare
Provided by the Center for Medicare and Medicaid Services.
U.S. Dept of Health and Human Services
Links and information on Grants & Funding, Resource Locators, Diseases & Conditions, Aging, Safety & Wellness, Drug & Food Info, Policies & Regulations, Reference Collections, Disasters & Emergencies, Families & Children, etc.
STATISTICS & MISC. HEALTH INFO.
ClinicalTrials.gov (sponsored by National Library of Medicine)
National database of 4,000 clinical trials & studies for serious illnesses. Covers 47,000 sites.
Health Finder
(National Health Information Center, U.S. Dept of Health & Human Services)
Comprehensive library of health information (guides, prescription info, journals), government agencies, nonprofit organizations & universities. Alphabetical listings of categories and topics.
Medicine Net
Information on diseases, treatments, procedures, drugs (includes medications for depression).
Medline Plus
(U.S. National Library of Medicine & National Institute of Health)
Over 600 health topics, nightly newswire updates, interactive tutorials, medical encyclopedia, drug information, directories of health facilities and professionals.
Mental Health: A Report of the Surgeon General (1999)
www.surgeongeneral.gov/library/mentalhealth/home.html
Mental Health: Culture, Race, Ethnicity, A Supplement to Mental Health:
A Report of the Surgeon General (2001)
www.surgeongeneral.gov/library/mentalhealth/cre/
National Center for Injury Prevention and Control (Statistics)
Centers for Disease Control (CDC) facts, data, publications, funding, and WISQARSTM for customized reports of data.
National Library of Medicine
(U.S. National Institute of Mental Health)
World's largest medical library and the creator of MEDLINE. Also provides information about education and funding opportunities.
National Institute of Mental Health (Statistics)
www.nimh.nih.gov/publicat/numbers.cfm
National Mental Health Association (Statistics)
www.nmha.org/infoctr/factsheets/15.cfm
National Mental Health Information Center
(U.S. Substance Abuse & Mental Health Services Administration - SAMHSA)
Information on mental health topics and programs.
World Federation for Mental Health
World Health Organization (WHO), Burden of Disease (Statistics)
www.who.int/healthinfo/bod/en/index.html
OTHER
BBB Wise Giving Alliance (Charities Index)
Extensive listing of charities. Includes evaluations. Formed through a merger of the National Charities Information Bureau and the Council of Better Business Bureaus' Foundation and its Philanthropic Advisory Service
Community Health Charities
Facilitiates charitable contributions in the workplace. Employees designate charities and their donations support member charities (research, patient services and outreach in local communities).
www.healthcharities.org
The Delta Society
Unites people with mental and physical disabilities & patients in healthcare facilities with professionally trained animals to improve human health through service and therapy animals.
www.deltasociety.org
Hopeline
Proceeds are used to provide wireless phones and cash grants to local shelters and non-profit organizations that focus on domestic violence prevention and awareness. Collects no-longer-used wireless phones, batteries and accessories in any condition from any wireless service provider. Phones that can be refurbished are sold for reuse and those without value are disposed of in an environmentally sound way.
www.verizonwireless.com/hopeline
The National Coalition of Creative Arts Therapies Associations (NCCATA)
An alliance of professional associations dedicated to the advancement of the arts as therapeutic modalities. Over 8,000 individual members of six creative arts therapies associations. Creative arts therapies include art, dance/movement, drama, music, poetry, and psychodrama therapy.
National Education for Assistance Dog Services (N.E.A.D.S.)
Trains & provides rescued and donated dogs to assist people who are deaf or physically disabled. NEADS is dedicated to helping people with physical disabilities.
www.neads.org
Oprah's Angel Network
A public charity that encourages people around the world to make a difference in the lives of others. Provides grants to non-profit organizations, supports charitable projects, raises funds for tragedies such as Hurricane Katrina. Includes specific guidance on how you can "Start Making a Difference" - where to start, tips and resources, questions to ask yourself, and how to form a "Kindness Chain."
What I WIsh You Knew
Worldwide, multi-cultural teen scholarship program. Essays addressing mental health needs and ideas to foster communication among adults and among continents.
Terry L. Wise, J.D. - Author & Speaker
Note: These links are provided for informational purposes only. The appearance of external hyperlinks is not an endorsement of these websites or any of the information contained therein.