Agencies and Organizations to Assist Caregivers
The following contains information about agencies and organizations that are valuable resources to receive information, support, and assistance.
The information in this section was provided by the National Family Caregivers Association (NFCA) at http://www.thefamilycaregiver.org
Caregiver SOS is a non-profit 501(C) 3 supporting programs that serve seniors and their caregivers in our community, with special emphasis on wellness, prevention, and living well with chronic illness.
National Association of Area Agencies on Aging
Website: http://www.n4a.org -or- http://www.eldercare.gov
Eldercare Locator provides referrals to Area Agencies on Aging via zip code locations. Family caregivers can also find information about many eldercare issues and services available in local communities.
Finding Resources in Your Local Area
In addition to using the information listed in this section, don’t forget to also find out what services and organizations are available in your local community. Even if you think you will not qualify for specific services, agencies may be able to make referrals to other organizations which may be of assistance.
- Access governmental agencies and organizations online.
- Contact the social service department of your local hospital or clinic.
- Locate adult day care centers and faith based agencies.
- Locate the local chapter of disease groups (i.e., Alzheimer’s Association, etc.)
- Check the county government listings in your local phone book for information on agencies.
AARP supplies information about caregiving, long-term care, and aging, including publications and audio-visual aids for caregivers.
Aging with Dignity
Aging with Dignity publishes the Five Wishes Living Will document, a very user friendly and comprehensive document that meets legal requirements in many states.
Alzheimer’s Association Caregiver Center
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research.
American Red Cross
American Red Cross has developed training programs for family caregivers. You will need to check with your local chapter to find out if there are classes in your area.
Caregiver.com produces Today’s Caregiver magazine, the first national magazine dedicated to caregivers, the “Sharing Wisdom Caregivers Conferences”, and website which includes topic specific newsletters and online discussion lists.
CarePages are free, private web pages that make it easy to reach out and receive messages of support and to stay connected to family, friends, co-workers, and others who care about you and your loved one. The service is available to anyone caring for a loved one, but may be particularly helpful to those who have recently found themselves in a caregiving role.
Children of Aging Parents (CAPS)
CAPS assists caregivers of the elderly with information and referrals, a network of support groups, and publications and programs that promote public awareness of the value and the needs of family caregivers.
Caring Connections provides free brochures on end-of-life topics including advance care planning, caregiving, hospice and palliative care, pain, grief and loss, and financial issues. Caring Connections also provides Advanced Directives for all states.
Consumer Consortium on Assisted Living (CCAL)
CCAL is a national consumer-focused organization that is dedicated to representing the needs of residents in assisted living facilities and educating consumers, professionals, and the general public about assisted living issues. Family caregivers can request the publication “Choosing an Assisted Living Facility: Strategies for Making the Right Decision, “which provides helpful information and a concise checklist for those contemplating this next step.
Faith in Action
Faith in Action is an interfaith volunteer caregiving program of The Robert Wood Johnson Foundation. Faith in Action makes grants to local groups representing many faiths who volunteer to work together to care for their neighbors who have long-term health needs. There are nearly 1,000 interfaith volunteer caregiving programs across the country.
Family Caregiver Alliance (FCA)
FCA is the lead agency in California’s system of Caregiver Resource Centers. FCA provides support and help to family caregivers and champions their cause through education, services, research, and advocacy. Services are specific to California, although information can be accessed nationally.
This website provides consumers and small businesses with quotes for health insurance and may help those who have lost their health insurance find an affordable alternative.
Hospice Foundation of America
The National Hospice Foundation hosts an annual teleconference on issues of bereavement, and has publications on grief and bereavement.
Hospice Directory is an online consumer database that lists hospices in North America and the U.S. All hospices are listed at no cost. It is a free service that assists families and individuals in locating a hospice within their community quickly. Also provides reliable information about hospice and end-of-life care to consumers.
Medicare Rights Center
This is an independent source of health care information and assistance for older and disabled Americans, their caregivers, and the professionals who serve them. Medicare Interactive (MI) is the one-stop source for information about health care rights, options, and benefits and it is designed to help people find answers to all their Medicare questions. The website also has a list of phone numbers for each state’s “State Health Insurance Assistance Program.”
This is the official website for the Centers for Medicare and Medicaid Services (CMS), the agency responsible for Medicare Rx. The toll-free number is 800/MEDICARE.
Medicare Rx Matter
Designed to help users make decisions about the new Medicare prescription drug plan, this site has three specific portals: one for family caregivers, one for people with Medicare, and one for professionals. The Website provides an overview, easy-to understand steps, and information to assist users in making personal decisions about Medicare prescription drug coverage.
This program is for persons who do not have coverage either through insurance or government subsidies for outpatient prescription drugs and for those who cannot afford to purchase medications at retail prices.
National Adult Day Services Association, Inc.
This association provides information about locating adult day care centers in your local area.
National Alliance for Caregiving
Although not an organization that helps family caregivers directly, The National Alliance for Caregiving’s website helps family caregivers learn about information, videos, pamphlets, etc. that have been reviewed and approved as providing solid information.
National Association for Home Care and Hospice
This organization for home healthcare agency providers allows family caregivers to use the Internet to access a list of member agencies across the country.
The National Association of Professional Geriatric Care Managers
Geriatric care managers (GCMs) are health care professionals, most often social workers, who help families in dealing with the problems and challenges associated with caring for the elderly. This national organization will refer family caregivers to their state chapters, which in turn can provide the names of GCMs in your area.
This information is also available online.
National Citizens’ Coalition for Nursing Home Reform
This organization serves as an information clearinghouse and offers referrals nationwide for help with concerns about long-term care facilities.
National Family Caregivers Association
NFCA is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, Congress, and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.
National Respite Locator Service
800-473-1727, ext. 222
Access a list of sites nationwide. While the vast majority focuses on respite care for families of special needs children, the service now assists programs that provide respite for caregivers of adults and the elderly.
New LifeStyles publishes regional directories of nursing homes, assisted living, and retirement communities. Call for a free copy or visit them on the Web.
Patient Advocate Foundation
Patient Advocate Foundation serves as a liaison between patients and their insurer, employer, and/or creditors to resolve insurance, job retention, and/or debt crisis matters relating to a patient’s condition.
Rosalynn Carter Institute (RCI)
RCI provides educational programs for caregivers, conducts research, and disseminates information about caregiving.
RxCompare is a free tool developed by Medicare Access for Patients-Rx (MAPRx) to help users determine if they need to enroll in a Medicare drug plan and, if they do, to systematically compare the drug plans where they live and select the best option for their prescription needs. RxCompare works in tandem with Medicare’s online “Prescription Drug Plan Finder” and with information available from plans or 1-800-MEDICARE.
Strength for Caring
Strength for Caring is an online resource and community for family caregivers that helps family caregivers take care of their loved ones and themselves. Strength for Caring is part of The Caregiver Initiative created by Johnson & Johnson Consumer Products Company, Division of Johnson & Johnson Consumer Companies, Inc.
U.S. Administration on Aging (AoA)
The Administration on Aging is the official federal agency dedicated to the delivery of supportive home and community-based services to older individuals and their caregivers. The AoA website has a special section on family caregiving.
Visiting Nurse Associations of America (VNAA)
VNAA promotes community-based home healthcare. Family caregivers can contact them to find their local VNA.
Well Spouse Association
Well Spouse is a national membership organization that gives support to husbands, wives, and partners of the chronically ill and/or disabled. Well Spouse has a network of support groups and also a newsletter for spouses.
Medic Alert + Safe Return Program
When someone with Alzheimer’s disease or related dementia (ADRD) is discovered missing every second counts. To assist caregivers with locating them, the Alzheimer’s Association developed the Safe Return Program. In a move to significantly improve the safety of individuals with ADRD, the Alzheimer’s Association and the MedicAlert Foundation have created an alliance to offer MedicAlert + Alzheimer’s Association Safe Return.
MedicAlert + Safe Return offers you the best of both worlds:
- Assistance when a person wanders or is lost
- Access to vital medical information in the time of need
How MedicAlert + Safe Return Works
When a person with dementia wanders or becomes lost, one call immediately activates a community support network to help reunite the lost person with his or her caregiver. When a person is found, a citizen or law official calls the toll-free 24-hour emergency response number on the identification product and the individual’s family or caregivers are contacted.
The nearest Alzheimer’s Association office provides support during search and rescue efforts. In addition, should medical attention be required, access to a personal health record is immediately available.
Benefits of MedicAlert + Safe Return Membership
- Provides you peace of mind
- Provides vital medical information to emergency responders
- Live 24-hour emergency response service for wandering and medical emergencies
- 24-hour family notification service
- 24-hour care consultation services provided by master’s level counselors
The enrollment kit includes:
- MedicAlert Identification bracelet or pendant
- Wallet card
- “6 Steps to a Safe Return” magnet
- Personal Health Record Summary
- Alzheimer’s Association brochure
Choosing an Assisted Living or Continuing Care Facility
The following checklist is reprinted from The American Bar Association Legal Guide for Older Americans by Charles P. Sabatino, et al. (1998), Times Books by the American Bar Association.
Reproduced by permission. All rights reserved. This information or any portion thereof may not be copied or disseminated in any form or by any means or downloaded or stored in an electronic database or retrieval system without the express written consent of the American Bar Association.
Checklist of Questions for Assisted Living and Continuing Care
These questions will help you to evaluate and compare just about any kind of supportive housing arrangement.
Questions Regarding the Solvency and Expertise of the Provider
- What is the provider’s background and experience? The provider is the person or entity legally and financially responsible for providing the housing. Some facilities advertise that they are “sponsored” by nonprofit groups or churches that in reality have no legal control or financial responsibility. Be wary if such illusory sponsorship is trumpeted.
- Is the provider financially sound? Ask a professional to review the facility’s financial, actuarial, and operating statements. Does it have sufficient financial reserves?
- Are all levels of care licensed or certified by the state? Check with the state office on aging and with the state licensing agency.
- How does the facility ensure the quality of its care and services? Is it accredited by any recognized private accrediting organization?
Questions Regarding Fees and Accommodations
- If there is an entrance fee, how much is it, and can you get a refund of all or part of it? The facility should provide a formula for a pro rata refund based on the resident’s length of stay, regardless of whether the facility or the resident initiates the termination. Some facilities offer fully refundable entrance fees.
- What is the monthly fee? When and how much can it be increased? What happens if you cannot afford higher fees? Some facilities give residents financial help if they become unable to pay.
- Do the fees change when the resident’s living arrangements or level-of-care needs change?
- How much say do you have in choosing where you live? How large is the living unit? Can you change or redecorate it?
- What if your marital status changes? Will your payments change, or will you be asked to move if you marry, divorce, become widowed, or have a friend or family member move into the unit?
- What if spouses require different levels of care?
Questions Regarding Services and Health Care
What services are included in my regular fees? Ask about coverage, limitations (based on cost, time, or number of visits), and special charges for the following matters:
Supportive/Social / Recreational Services
Meal services: Is the schedule reasonable? Is it flexible?
Special diets/tray service: (e.g., What is the policy on eating in your room?)
Utilities: Are they included in the monthly fee?
Cable television: Is it available? Who pays?
Furnishings: Can you bring your own?
Unit maintenance: Who is responsible for repairs?
Linens/personal laundry: Is there an extra charge for laundry?
Housekeeping: Is it included in the fees? What are the options?
Recreational/cultural activities: What is available? What is on-site?
Transportation: To where? Is there a limit on the number of trips?
Safety: What kind of security systems and policies are in place? Is there a fire emergency plan?
Health and Personal Care
Assessment and plan of care: What kind of assessment is done to determine your needs and a plan for meeting those needs? What are the qualifications of the person doing the assessment? Is a detailed plan of care developed? When and how is it reviewed?
Physician services: Can you choose your own doctor?
Medications: Who gives medications? How is it coordinated with your physician?
Nursing care facility services: Are they onsite? Who pays?
Nursing services outside a nursing unit: Is assistance with medications provided?
Private duty nursing: Is it available? Are there limits?
Dental and eye care: Is it included in fees? Available on-site?
Personal care services: What if you need assistance with eating, dressing, bathing, toileting, etc.?
Homemaker/companion services: Are they available? Is there a limit?
Drugs, medication, and medical equipment/supplies: Who pays?
Emergency call system: Is it available? Who pays?
- Are additional services always guaranteed? If the facility provides a nursing unit, what happens if a bed is not available when you need it?
- Can services be changed? To what extent does the facility have the right to cut back, change, or eliminate services, or change fees?
- What about pre-existing conditions? Does the facility limit its responsibility for certain health conditions or preexisting conditions? Can the facility ask you to move if you become too sick or impaired to be cared for by the facility?
- Who pays for health care? Can you receive Medicare and Medicaid coverage in the facility? Does the facility require residents to buy private insurance or participate in a special group insurance program for residents?
- Who decides that you need more care, and on what grounds? What are the criteria and procedures for determining when a resident needs to be transferred from independent living to assisted living, or to a nursing care unit, or to an entirely different facility? Who is involved in these decisions?
- What are the staffing levels? What are the professional qualifications of the staff? Nursing homes are regulated, but assisted living and other supervised care may not be. Make sure that staff is professionally equipped to do their jobs. What kind of emergencies are staff expected to handle and how are they trained for them?
Questions Regarding the Rights of Residents
Can residents participate in facility management and decision making? What input do you have in activity and meal planning and in-house rules? Is there a resident council? How are complaints and disputes handled?
- What if you want an exception to a policy or to routine scheduling?
- What are the grounds for eviction? Is there a right to appeal?
- Are the general operating rules reasonable? What rules cover the facility’s day-to-day operation? Are they reasonable? What happens if you break a rule? Can you appeal?
- What happens if you are injured? Does the contract release the facility from liability for injury resulting from negligence? Avoid such waivers.
Assisted Living Communities Checklist
Use the following checklist to assist you in comparing assisted living communities. Ideally, both caregiver and care recipient will be involved in the selection process. It will make the adjustment to a new environment easier, and help your loved one continue to be part of the planning process. Here is a checklist to help you evaluate the assisted living residence as you tour the facility.
____ Do you like the location and outward appearance of the facility?
____ On entering, is your first impression that of an attractive, home-like atmosphere?
____ Does the residence appear clean, free of odors, and is there climate control for heat and cooling?
____ How did staff greet you?
____ Do the residents appear to be happy and comfortable?
____ Were you given an opportunity to talk with some residents, and discuss how they liked the facility and the staff, and how they are treated?
____ How are the residents dressed? Are they presentable, and do they socialize with each other?
____ Does the staff appear friendly, outgoing? Do they answer questions appropriately?
____ What sort of activities are available for the residents? Do they seem appropriate for the residents?
____ What are visiting hours? Is there any restriction on when residents may receive visitors?
____ Are there recreational and community rooms? And are they free of clutter?
____ What do the residents’ rooms look like? Is there enough space to hold some favorite belongings?
____ Is there sufficient closet and storage space for each resident?
____ Are there accommodations for privacy for the residents?
____ Are all areas easily accessible with wheelchairs or walkers including doorways and hallways?
____ Are there handrails or grab bars to aid in walking? Is there an elevator available for those who need it?
____ Are the bathrooms easy to navigate in?
____ Are cupboards easy to reach?
____ What are the meals like? Is there an opportunity for input by the residents?
____ How does the facility accommodate the special dietary needs of the residents?
____ Is there a copy of the Residents Bill of Rights displayed prominently?
____ Does the residence comply with local and/or state requirements?
Evaluating needs assessments, contracts, cost, and finances
____ How long after admission is the resident plan of care written?
____ Are resident and family involved in developing the care plan?
____ How are the resident’s need for services determined, and how often are they reassessed?
____ What are the resident’s responsibilities regarding the plan of care? Can they be discharged for non-compliance?
____ Is there a policy for disciplinary action for the residents? What is the facility’s policy on disciplinary action for protocol infractions by staff?
____ Is there a resident advocate available to discuss problems or concerns?
____ What is the cost of the services? What are billing, payment, and credit policies?
____ Are there any government or other programs available to help cover the cost of services to the resident?
____ What services are included in the contract? Are there personal care and health care accommodations and support services?
____ What are the arrangements for medical follow-up with the resident’s doctor?
____ May the resident maintain their current physician, or does the facility require the use of a staff physician?
____ Does the resident need to have an Advance Directive for Health Care in place?
____ What is the facility’s policy on “Do Not Resuscitate” orders?
____ What hidden costs are there? Are there different costs for various levels of care or categories of service?
____ How do you pay for additional services?
____ Are residents able to handle their own finances, with minimal assistance of staff, if they are capable, or does a family member or outside party need to be designated to do so?
____ What is the policy on insurance and personal property?
____ What is the resident to staff ratio? How does this compare to state and local licensing requirements?
As you can see, not all of these items can be checked off. They may require more thought or investigation, and certainly a long answer. We do hope, however, that this list will get you thinking about important considerations when choosing an assisted living facility.
Assisted Living and Nursing Home Complaints
What Is an Ombudsman?
An ombudsman is a specially trained and certified individual, either volunteer or staff, who advocates for quality care in nursing and assisted living facilities.
- Provides information to nursing home residents and family about rights, complaint procedures, and grievance resolutions.
- Investigates and resolves complaints by or on behalf of nursing home residents.
- Maintains current listings of nursing homes, personal care homes, and assisted living facilities for family consultation and placement assistance.
- Provides facility inspection reports to families upon request.
- Assists with Medicaid eligibility procedures including application completion, information on spousal impoverishment, spend-downs, and Miller Trusts.
- Recruits and trains volunteers committed to quality care in nursing homes to serve as certified volunteer ombudsmen.
You can volunteer to advocate for nursing home residents. No experience is necessary. Training for this unique and rewarding opportunity to serve as an advocate for long-term care residents is available.
When Should an Ombudsman Be Called?
Residents and family should try to resolve problems and differences with the facility staff whenever possible.
When this is not possible, or when the resident or family is unsure, call 1.800.252.2412 to be connected to a regional ombudsman program.
A certified ombudsman, volunteer or staff, will assess the concerns and recommend possible courses of action.
Often, the ombudsman can resolve the problem without involving other groups or agencies. Sometimes, the resident council or family support group is involved in the resolution. When the ombudsman cannot resolve the problem, or when it involves neglect, the complaint is referred to an appropriate agency.
In all situations, the complaint is handled confidentially and information is not released without approval of the resident or legal guardian.
The ombudsman program is also a good source of information about selecting a long-term care facility, eligibility criteria, residents’ rights, and other services for the elderly.