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Resources

INTERNET SITES

Wyandotte and Leavenworth County Area on Aging

The Office of the Area Agency on Aging is responsible for planning, coordinating, funding and advocating for programs and services which meet the needs of Wyandotte and Leavenworth County residents age 60 and over. Services are targeted to individuals with the greatest social and/or economic need, placing emphasis on serving those older persons who are low-income, minority and/or those with physical and mental disabilities. http://www.wycokck.org/aging/

Johnson County Area Agency

Area Agencies on Aging (AAAs) are local aging programs that provide information and services on a range of assistance for older adults and those who care for them. By contacting your local agency you get access to critical information including: Available services in your area; Mobility assistance programs, meal plans & housing; Assistance in gaining access to services; Individual counseling, support groups and caregiver training; Respite care; Supplemental services, on a limited basis. http://www.agingcare.com/local/Johnson-County-Area-Agency-on-Aging-Olathe-Area-Agency-on-Aging-KS

Jayhawk Area Agency on Aging

Jayhawk Area Agency on Aging (JAAA) has been assisting seniors for over 30 years. JAAA can provide assistance to seniors and adults with disabilities needing various levels of support. JAAA will help individuals maintain their independence by providing programs and services such as information and assistance, in-home services, minor home repair, case management, and much more. These programs and services, among others are available in Douglas, Jefferson and Shawnee Counties in Kansas. If you do not live in these three counties you may find help through an Area Agency on Aging in your county. http://jhawkaaa.org/

The Aging and Disability Resource Center

The Aging and Disability Resource Center — ADRC — is a trusted source of information where people of all ages, abilities and income levels – and their caregivers – can go to obtain assistance in planning for their future long-term service and support needs. Since November 1, 2012, the ADRC has been available to provide Kansans with information and referrals. ADRC staff members can also put residents in contact with local Options Counselors. http://www.ksadrc.org/

Health Compass

Health Compass, developed by the American Federation for Aging Research and the Merck Institute of Aging & Health, offers older adults and their care givers a way to search and evaluate health information on the Web in order to make informed healthcare decisions. A section on improving communication with medical personnel is also included. www.healthcompass.org

Strength for Caring

This award-winning website provides a wealth of information for care givers on topics such ass financial planning, legal issues, insurance and daily care. It includes links to other care giver websites and the ability to download and print Care giving brochures from a variety of organizations. Care givers will also find helpful worksheets and tips including a “Doctor’s Office Visit Checklist” from the National Family Care givers Association. In addition, the website has a listing of statewide and local Care giving and healthcare resources as well as support information for each of the 50 states. www.strengthforcaring.com

 

ASSOCIATIONS AND ORGANIZATIONS

AARP
601 E Street, NW
Washington, DC 20049
Toll free:888-687-2277 TTY: 887-434-7598

AARP is a nonprofit organization that offers educational programs, services and support for adults age 50 and older. The AARP website contains an extensive care giver section that provides information on care giver support, long-term care, home care and housing. Publications are available online and can also be mailed free upon request. Access their website at

www.aarp.org/families/caregiving

American Association of Homes and Services for the Aging (AAHSA)
2519 Connecticut Ave., NW
Washington, DC 20008
Telephone:202-783-2242 Fax:202-783-2255

The American Association of Homes and Services for the Aging represents nonprofit nursing homes, assisted living residences, senior housing and community service organizations for older adults. It offers free publications on selection housing and care options and provides lists of accredited care communities, as well as information on contacting individual state associations of AAHSA. www.aahsa.org

Assisted Living Federation of America (ALFA)
1650 King Street, Suite 602
Alexandria, VA 22314
Telephone:703-894-1805 Fax 703-894-1831

The Assisted Living Federation of America is a trade association that represents the assisted living industry. ALFA provides information and education to consumers, industry partners and researchers. Its website provides an online directory of homes and services by city and state. E-mail: info@alfa.org. www.alfa.org

National Adult Day Services Association (NADSA)
2519 Connecticut Avenue NW
Washington, DC 20008
Toll free: 1-800-558-5301 Fax: 1-202-783-2255

NADSA is a 20-year-old organization that serves as the national voice for adult day service providers. You can search the NADSA website for adult day services in your area. The site also includes a guide to selecting an adult day center. E-mail: infor@nadsa.org. www.nadsa.org

National Alliance for Caregiving (NAC)
4720 Montgomery Lane
5th Floor
Bethesda, ND 20814
E-mail: info@caregiving.org

The National Alliance for Care giving website contains research on Care giving as well as practical assistance for care givers including a guide to hospital discharge planning, a guide for caring for aging parents and a guide specific to palliative care. www.caregiving.org

National Association for Home Care and Hospice (NAHC)
228 Seventh Street, SE
Washington, DC 20003
Telephone:202-547-7424 Fax:202-547-3540

The National Association for Home Care and Hospice is a trade association that represents the interests of home care agencies, hospices and home care aide organizations. Membership in the association is offered at six different levels, from agencies to individuals. Members receive the latest news on the NAHC Member Network Listserv, weekly news in the NAHC Report and a monthly magazine, Caring, as well as other services. NAHC’s website has a consumer section devoted to choosing a home care provider. www.nahc.org

National Family Caregivers Association (NFCA)
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Toll free:800-896-3650 Fax:301-942-2302

The National Family Care givers Association in a non-profit organization dedicated to providing support and assistance to care givers through information, education, public awareness and advocacy. NFCA offers Care giving tips, care giver advocacy updates and resources online. A quarterly newsletter called Take Care! Self-Care for the Family Care giver, a support network and resource guides are available online for members. Membership is open to individuals as well as corporations and ranges from $20 to $200 annually, and is free for family care givers.

E-mail:info@nfcacares.org. www.nfcacares.org

The Well Spouse Association
63 West Main Street, Suite H
Freehold, NJ 07728
Toll free: 800-838-0879 Fax: 732-577-8644

The Well Spouse Association is a national, nonprofit membership organization that gives support to wives, husbands and partners of people with chronic illnesses and/or disabilities. They provide a bimonthly newsletter, Mainstay, mutual aid support groups in many areas, letter writing support groups, an annual conference and other regional and weekend meetings around the country. The organization also works to make health care professionals and the general public aware of the great difficulties care givers face everyday. E-mail: info@wellspouse.org     

ALZHEIMER’S DISEASE

Sponsored by Novartis and the Mayo Clinic, this site is an online resource for information about Alzheimer’s disease. It contains Caregiver’s Corner, a monthly column designed to address caregivng issues, and includes a link to the Alzheimer’s Resource Center at the Mayo Clinic. www.alzheimersdisease.com

ALZwell-Alzheimer’s Care giver Page

This site provides categorized book recommendations, cargiver stories, information related to a variety of topics including care options and legal and financial matters and news updates related to Alzheimer’s disease. Additionally, care givers can search for resources within their state. www.alzwell.com

 

ASSOCIATIONS AND ORGANIZATIONS

 

Alzheimer’s Association
Heart of America Chapter
3846 W 75th Street
Prairie Village, KS 66207
913-831-3888

The Alzheimer’s Association provides resources for families and care givers of those suffering from Alzheimer’s disease. It also supports research efforts and provides information on advocacy, conferences and programs. A database of local chapters is searchable by zip code. E-mail: kelly.jones@alz.org www.alz.org/kansascity

Alzheimer’s Disease Education and Referral Center (ADEAR)

ADEAR provides research, information, publications and a clinical trials database. It is a service of the National Institute on Aging, one of the National Institutes of Health. The site features links to Federal resources and includes a consumer publication Understanding Alzheimer’s Disease which can be downloaded and printed from the website at www.nia.nih.gov/alzheimers or ordered by calling 1-800-438-4380. Information specialists at the toll free number can also answer questions about Alzheimer’s disease and provide referrals to local support services.

CANCER

INTERNET SITES

National Coalition For Cancer Survivorship
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-5600
E-mail: info@canceradvocacy.org
www.canceradvocacy.org

 

ASSOCIATIONS AND ORGANIZATIONS

American Cancer Society
1599 Clifton Road, NE
Atlanta, GA, 30329
Toll free:800-ACS-2345 (800-232-2345)

The American Cancer Society offers an array of cancer-related information and sponsors a wide range of services for cancer patients and their families, including self-help groups, transportation programs and limited financial aid. Additional resources can be found on its website, www.cancer.org

CancerCare
275 7th Avenue
Floor 22
New York, NY 10001
Toll free:800-813-HOPE (800-813-4673)

CancerCare is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance. CancerCare’s services include a toll free counseling line, telephone education workshops and regularly scheduled online educational chat sessions. www.cancercare.org

The National Cancer Institute
NCI Public Inquiries Office
6116 Executive Boulevard
Room 3036A
Bethesda, MD 20892-8322
Toll free:800-4-CANCER (800-422-6237)

The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training and health information dissemination with other programs related to the cause, diagnosis, prevention and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients. www.cancer.gov

The National Cancer Institute (NCI) has developed the following three care giver publications based on focus groups from care givers with loved ones in treatment and post-treatment, as well as those who had recently lost someone. The booklets focus on the care giver, not how to take care of the patient. Although specific to cancer, the information translates for any disease or condition. The publications can be downloaded in PDF from the web or ordered by calling 1-800-4-CANCER. The publications are free.            When Someone you Love is Being Treated for Cancer      www.cancer.gov/cancertopics/When-Someone-You-Love-Is-Treated

           

CEREBRAL PALSY

ASSOCIATIONS AND ORGANIZATIONS

United Cerebral Palsy
1660 L Street, NW, Suite 700
Washington, DC 20036
Toll free: 800-872-5827
Fax:202-776-0414
TTY:202-973-7197

United Cerebral Palsy’s national office serves people with disabilities and others through programs, an information and referral service, legislative advocacy, technology initiatives and research. The site includes a UCP One-Stop Resource Guide for each state. E-mail: ucpnatl@ucp.org       www.ucp.org

 

DIABETES

ASSOCIATIONS AND ORGANIZATIONS

American Diabetes Association
1701 North Beauregard Street
Alexandria, VA 22311
Toll free:800-DIABETES (800-342-2383)

The American Diabetes Association provides news, information and research findings on diabetes to patients, families, care givers and health care professionals. A database of local chapters is searchable by zip code. E-mail: askada@diabetes.org

www.diabetes.org

 

HEART DISEASE

ASSOCIATIONS AND ORGANIZATIONS

American Heart Association National Center
7272 Greenville Avenue
Dallas, TX 75231
Toll free: 800-AHA-USA1 (800-242-8721)

The American Heart Association provides information of fighting heart disease and stroke. Its website features a section on heart related conditions as heart failure and a support section for care givers. www.americanheart.org

 

MENTAL ILLNESS

ASSOCIATIONS AND ORGANIZATIONS

Mental Health America
2000 N. Beauregard Street, 6th Floor
Toll free:800-969-6642
TTY:800-433-5959 Fax:703-684-5968

Mental Health America, formerly known as the National Mental Health Association, is a nonprofit organization with 320 affiliates throughout the country dedicated to helping all people lead mentally healthier lives. The website includes FAQs, a section related to specific mental disorders and their treatment and facts about medications used to treat mental illness. The site also includes a “Help” section which provides individuals and their care givers with information about various treatment options and support groups and allows them to search for local resources including MHA affiliates and mental health professionals. www.mentalhealthamerica.net

           

MULTIPLE SCLEROSIS

ASSOCIATIONS AND ORGANIZATIONS

The National Multiple Sclerosis (MS) Society
733 Third Avenue
New York, NY 10017
Toll free: 800-Fight-MS (800-344-4867)

The National Multiple Sclerosis Society provides advocacy, research and information about living with MS and a list of local resources. A database of local chapters is searchable by zip code. E-mail: info@nmss.org www.nmss.org

 

PARKINSON’S DISEASE

ASSOCIATIONS AND ORGANIZATIONS

National Parkinson Foundation, Inc.
1501 NW 9th Avenue
Bob Hope Road
Miami, FL 33136-1494
Toll free:800-327-4545
Fax:305-243-4403

The foundation provides educational and medical information to Parkinson patients, their families, neurologists and general medical practitioners. An extensive list of patient and care giver resources can be found on its website.      www.parkinson.org

 

STROKE

ASSOCIATIONS AND ORGANIZATIONS

American Stroke Association
National Center
7272 Greenville Avenue
Dallas, TX 75231
Toll free: 888-4-STROKE (888-478-7653)

The American Stroke Association provides educational materials related to stroke, including a question and answer section for consumers, information on many of the issues individuals face in a section called “ life after a stroke” and a free subscription to Stroke CONNECTION Magazine. The site also includes a database to search for local resources at www.local.strokeassociation.org. To order publications or if you have questions you may also call their toll free number above. www.strokeassociation.org

National Stroke Association
9707 E. Easter Lane
Englewood, CO 80112
Toll free:800-787-6537
Fax:303-649-1328

The National Stroke Association offers information about stroke risk reduction, symptoms, the effects of stroke and a list of regional resources for care givers and survivors of stroke. www.stroke.org


FINANCIAL AND LEGAL RESOURCES

ASSOCIATIONS AND ORGANIZATIONS

American Bar Association (ABA)
Commission on Law and Aging
740 15th Street, NW
Washington DC, 20005-1022
Telephone: 202-662-8690

The site offers information addressing the legal aspects of planning for incapacity, including considering durable and medical powers of attorney, living wills and trusts. It provides booklets on Medigap insurance, advance medical directives and housing rights of older persons. www.abanet.org/aging

National Academy of Elder Law Attorneys (NAELA)
1604 North Country Club Road
Tucson, AZ 85716
Telephone:520-881-4005
Fax:520-325-7925

This site provides a national registry of attorneys specializing in elder law and a question and answer section related to finding and working with an elder law attorney. NAELA does not provide referrals to individual attorneys. www.naela.org

 

END OF LIFE CARE

INTERNET SITES

Five Wishes
Aging with Dignity
PO Box 1661
Tallahassee, FL 32302-1661
Telephone:850-681-2010
Fax:850-681-2481

Five Wishes is a living will and a durable power of attorney for health care, valid in the majority of states, that addresses not only an individual’s medical wishes, but also their personal, emotional and spiritual needs. It is easy to understand and use. (Check with your state to see if it will honor the Five Wishes document.) The project was supported by a grant from The Robert Wood Johnson Foundation. To order, write to Aging with Dignity, call toll free: 888-5-WISHES (888-594-7437), or go to www.agingwithdignity.org for online ordering. Single copies are $5.00 each; pricing for bulk orders is available.

 

ASSOCIATIONS AND ORGANIZATIONS

American Hospice Foundation
2120 L Street, NW Suite 200
Washington, DC 20037
Telephone:202-223-0204
Fax:202-223-0208

The American Hospice Foundation supports programs that serve the needs of terminally ill and grieving individuals. The site contains information related to hospice and palliative care and caregiver specific information on end of life care and grief.       www.americanhospice.org

National Hospice & Palliative Care Organization (NHPCO)
1700 Diagonal Road, Suite 625
Alexandria, Virginia 22314
Telephone:703-837-1500
Fax:703-837-1233

This organization was established in 1978 as the National Hospice Organization and changed its name in 2000. It is the largest non-profit hospice and palliative care organization representing programs and professionals in the United States. This site includes a wealth of information about resources. The NHPCO Helpline (800-658-8898) provides free consumer information on hospice care and puts the public in direct contact with hospice programs. www.nhpco.org

 

FOR PET OWNERS

Home for Life Angel Care Program
P.O. Box 847
Stillwater, MN 55082
Toll free:800-252-5918
Fax:651-998-1512

The national “Home for Life Animal Sanctuary’s Angel Care Program” provides a safe, affordable residence for an individual’s pet if the owner dies, moves to a nursing home, or to another residence where pets are not allowed. The animal is guaranteed a “Home for Life” when their owner meets the qualifications for enrollment of their pet in the program. Enrollment fees differ depending on the age of the individual. If the owner’s circumstances change and pet placement is necessary, Home for Life personnel arrange for air or ground travel or even retrieval to the sanctuary directly by Home for Life caretakers. Home for Life is a non-profit corporation.   E-mail: info@homeforlife.org

 

OTHER GOVERNMENT RESOURCES

Benefits CheckUp

This site was developed by the National Council on Aging (NCOA) and can assist seniors and their families in determining benefit eligibility for services in their area. Access the site at: http://www.benefitscheckup.org/

The National Family Caregiver Support Program (NFCSP), established as a result of the Older Americans Act Amendments of 2000, supports caregiver programs through area agencies on aging across the country. You can locate these services in your community by calling the Eldercare Locater at 1-800-677-1116.        

Eldercare Locator
Toll free:800-677-1116 (9 a.m.-8 p.m. ET)

The Eldercare Locator is a public service of the U.S. Administration on Aging. The service helps older adults and their caregivers find service in their area. The Eldercare Locator can be accessed through its toll free telephone line, staffed by trained information specialists, or through its website. www.eldercare.gov

FirstGov for Seniors

FirstGov for Seniors offers a wide range of information and government services. One of its objectives is to offer the convenience of conducting business with the government online, such as estimation of Social Security benefits. It also provides information related to a number of topics including health, housing for older Americans and consumer protection for seniors. www.seniors.gov

Healthfinder

Developed by the U.S. Department of Health and Human Services, healthfinder helps users locate selected online publications, clearinghouses, databases, websites and support and self-help groups, as well as government agencies and nonprofit organizations that produce reliable information for the public. Consumers can also take online quizzes related to a variety of health topics. www.healthfinder.gov

This site is the official U.S. government consumer site for information on Medicare and is operated by the Centers for Medicare & Medicaid Services (CMS). At this site consumers can search for information on health plans, nursing homes, dialysis facilities, Medigap policies, Medicare activities, participating physicians and Medicare prescription drug plans in their area. The site also provides information on Medicare basics such as eligibility, enrollment, Medicare cards and replacement cards. Medicare publications may also be ordered. Some publications are available in large print, Spanish, Chinese, audiotape and Braille.            Toll free: 800-MEDICARE (800-633-4227)   www.medicare.gov

Medicare Basics: A Guide for Caregivers

This an online resource produced by the Centers for Medicare & Medicaid Services (CMS) to help caregivers understand their care recipients’ options under Medicare and guide them through eight decision points in the healthcare process. The guide is available at:www.medicare.gov/Publications/Pubs/pdf/11034.pdf

National Institute on Aging (NIA)

The National Institute on Aging produces a number of publications that contain valuable information related to health issues that affect older Americans. Publication categories include sections on healthy aging, caregiving, planning and decision making, making sense of health information and a variety of disease specific conditions. The site currently offers a publication called Talking With Your Doctor at http://www.nia.nih.gov/HealthInformation/Publications/TalkingWithYourDoctor/ which is a guide for older people to help them to get the information they need when seeing the doctor. Other publications can be downloaded or ordered from http://www.niapublications.org/ For help with ordering publications you may also call 1-800-222-2225.

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