CHECK LIST FOR THOSE LIVING WITH A CHRONIC CONDITION & THOSE THAT CARE FOR THEM: NATIONAL EDITION
The following checklist has been developed to help identify resources that might be helpful. It also provides a way to track what you are doing for yourself or those you are caring for. As you go through the checklist, you may find that you qualify for a service, but aren’t sure how to find them in your community. To assist you in finding resources in your community, you can contact:
• Information and referral service helpline for your state: Go to www.211.org to find the helpline for your state, check the front page of your phone book
• The Independent Living Center for your State Call 713-520-0232
• A condition specific organization, such as the Diabetes Association, Cancer Society
•http://www.eldercare.gov: Connects older Americans and their caregivers with sources of information on senior services. 1-800-677-1116 weekdays, 9:00 am-8:00 pm
• State and Local Health Department Call 202-371-9090 or check the front pages of your local phone book.
Support Network: If you haven’t joined a support group, consider doing so on-line or in person. Places to find a support group include: local newspaper; clinic or doctor’s office where you receive care; condition specific organizations; asking friends and family; your place of worship; or local library. Find friends and places that can support you emotionally, and where it is safe to talk about your health issues. Be sure to consider AA, Al-Anon, church group, or even a social club. On-line resources.
Legal: Planning ahead is important for both you and your family’s future. You will need to have:
• a will;
• living will (advanced directives);
• durable power of attorney (makes financial & legal decisions for you if you are unable to do so);
• durable power of health attorney (makes health care decisions for you if you are unable to do so);
• legal guardian (who would care for your child or other dependent adult if you were unable to do so).
It is best that you work with a lawyer in completing the necessary paper work. All states have Legal Aid offices, which can assist you. Check your phone book for Legal Aid office closest to you.
Case manager for medical issues. A case manager is someone who can help you monitor your care. You can learn more about medical case management from your doctor or clinic; the social work department where you receive your medical care; or a condition specific organization.
Case manager for social needs. A case manager can help you with such issues as housing, transportation, finances and completing forms. Places which offer this type of case management include:
• Community Action Agencies (call your state information referral network for the Agency closest to you or go to http://www.communityactionpartnership.com and look under Community Action Network
• Independent Living Center
• Area Agency on Aging (sometimes called Council on Aging)
• Condition specific organization (e.g. Cancer Society, Diabetes Association)
• The social work department at the hospital or clinic where you receive your care.
• Visiting Nurses Association
• Your place of worship
Note: Your case manager for social and medical needs can be the same person. If you are already enrolled in a Area Agency on Aging, or have Medicaid, you have a case manager. Know who they are.
Personal Health Notebook: It is important to keep a health notebook about the care you are receiving as it helps to monitor trends, allows you to share information with other providers, helps to reduce errors at medical appointments, when your chart may not be available, and can be a resource in making important health decisions. There are a variety of free on-line e-health tools you can use. On-line tools.
Organize Help: Lotsa Helping Hands is a free private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis, caregiver exhaustion, or when caring for an elderly parent. If you are going to be needing help for any length of time, this is an excellent way to organize help and support. It’s the right answer to the common question, “What Can I do to help?”
Shared/Informed Decision Making: Programs that can help you with the process of making a health care decision. Foundation for Informed Medical Decision Making also provides tools and resources. “Hard Choices for Loving People” is an excellent booklet resource to help when you are needing to make choices for other people.
Health Insurance Forms and Policies Help
• Within your state’s Health Department, contact Division of Elderly and Adult Services ; Office of Health Care Ombudsman; or Medicare Help To find your state and local health department, check your local phone book or call 202-371-9090
• Most states have a number of programs to assist those who can not afford health insurance, including:
• Medicaid with special programs for children
• Breast and Cervical Cancer Screening Programs for women
• Low cost health insurance
Contact your state or local health department for more information
• If you are a veteran, there are a variety of programs to assist you. Call 1-877-222-VETS (8387)
• If you are disabled and/or 65 or older, you qualify for Medicare
• Many states have free clinics. To find out what is available in your community, check your phone directory or go on-line
For more resources, go to No Job/No Insurance/No Care: What are my options?
Paying for Medications: Drug companies offer a number of different programs to assist patients in obtaining necessary medication. Most states offer prescription programs for persons with low-income and Medicare has a special prescription program. Resources to consider:
- Prescription Assistance Program
- Free Medicine Program
- Needy Meds
- Together Rx Access
- Rx Assist
- Tricare Senior Pharmacy For uniformed services beneficiaries 65 years of age or older.
Non Medical needs: There are many indirect costs of living with a chronic condition, such as transportation, housing, childcare, home maker services etc. There are a wide array of community services that can be of help to you. Places to consider:
• The Community Action Agency closest to you. Check your local phone book for listing or go to http://www.communityactionpartnership.com and look under Community Action Network
• Area Agencies on Aging, if you are 65 or older, provide case management and a variety of other services: Contact elder care hotline for you state, use Eldercare Navigator to find your state’s hotline
• Social services department of the hospital or clinic where you are receiving your care
• State Independent Living Center 713-520-0232
• Civic organizations, such as Rotary, Lions club
• Many area schools and colleges offer student power to assist with yard work and home chores
Be aware that even if you qualify for a particular service, because of funding issues, the service may still not be available. It is important to develop a good support network to assist you.
With the exception of Workers Compensation, information and forms for the following programs can be obtained by calling 1-800-772-1213 or (TTY) 1-800-325-0778 or going on-line
• Supplemental Security Income (SSI): A Federal income supplement program funded by general tax revenues (not Social Security taxes), designed to help aged, blind, and disabled people, who have little or no income. It provides cash to meet basic needs for food, clothing, and shelter.
• Social Security Disability Insurance (SSDI): Must have worked in a job that was covered by Social Security; meet Social Security’s definition of disability; and be totally disabled and unable to work.
• Social Security Retirement: Best to call three months before eligibility for funds takes place.
• Social Security Survivors: If a parent or spouse dies, you may be eligible for benefits.
• Special Benefits for WWII Veterans: If you qualify for SSI, and were a veteran of WWII, you will qualify for this benefit.
• Short-term disability benefits: Designed to provide a paycheck to employees during periods of serious illness resulting in total disability, many companies offer optional long-term disability insurance (often paid by the employee). Short-term disability insurance covers the employee during the "gap" between the two insurance policies. Check with your employer, human resources, to learn if you are eligible for short term disability.
• Workers Compensation: A program that provides replacement income and medical expenses to employees who are injured or become ill due to their jobs. Financial benefits may also extend to workers' dependents and to the survivors of workers who are killed on the job. You will need to check with your employer, human resources, about such benefits.
Life settlements and viaticals If you have a life insurance policy, you can consider these options. Be cautious about such activities and check with a financial advisor before doing so.
• Life Settlements allows policy owners to cash out of unwanted, unaffordable or obsolete life insurance policies insuring a senior over age 65.
• Viatical Settlements enable someone facing a terminal illness to utilize the present day value of their life insurance policy to ease the financial burdens that can be caused by the high costs of medical care.
Another option is a Reverse Mortgage, which is a loan against your home that you do not have to pay back for as long as you live there. For more information
End of Life Care
• Hospice Care is usually provided at home with the help of a visiting nurse and is usually time limited, six months or less. Talk to your care provider for a referral.
• Palliative Care provides focused care to improve overall quality of life. This approach offers relief from pain and other symptoms, such as fatigue, nausea, loss of appetite, shortness of breath, and/or anxiety. It is not time limited and can be provided at any stage of the illness. Usually such care is provided by a team. Ask about services at the treating hospital or talk to your care provider.
• Funeral Consumers Alliance: Non-profit organization, dedicated to protecting a consumer’s right to chose a meaningful, dignified affordable funeral. Check www.funerals.org for state program.
Work related: Consider the following:
• If you are no longer able to work, consider filing for disability.
• If you would like to return to work, but are afraid of losing benefits, contact your state’s Benefit’s to Work Program through your state’s independent living center or vocational rehabilitation program for assistance.
• If you would like to return to work, but are no longer able to do your old job, and/or you’ve never worked but would like to do so, contact your state’s vocational rehabilitation (VR) program. VR can help you find a job, keep a job as well as be train you for a new career.