In the U.S. federal system, much of the responsibility for healthcare, nonmedical services such as personal care and homemaker services, and social services falls within the jurisdiction of the states, even though there is federal oversight and funding. And states have different ways of dealing with these issues. To make the process of getting the information you need a little easier, several websites offer state-by-state information, either through an interactive map in which you click on your state or an alphabetical listing where you enter the location by state, city, or zip code.
This article offers a selection of ten of these topics with some background about why they may be useful. The ten topics are organized very loosely into two main categories: resources for housing and community services (assisted living, Area Agencies on Aging, Eldercare Locator, home modification, and family caregiver support) and special topics related to medical care and quality-of-care issues (Medicaid, cost of care, advance directives, long-term care ombudsmen, and Beneficiary and Family-Centered Care Quality Improvement Organizations).
One way to use this information is to go to the website, find your state, and write down the name of the agency, email address, phone number, and any other relevant data. Keep the notes in a file so you can refer to the resources whenever needed. You can also bookmark the relevant pages on your computer.
Identifying Local Services through Area Agencies on Aging
A major source of local information is your Area Agency on Aging (AAA). (These are often called triple As, but don’t confuse them with the automobile club!). AAAs were established under the federal Older Americans Act in 1973 to respond to the needs of Americans age 60 and over in every local community. By providing a range of options that allow older adults to choose the home- and community-based services and living arrangements that suit them best, AAAs make it possible for many older adults to remain in their homes and communities as long as possible.In 1978, under amendments to the Older Americans Act, Indian tribal organizations that received grants under Title VI of the Act were designated AAAs. These Native American aging programs provide nutritional and supportive services to older American Indians, Alaskan Natives, and Native Hawaiians and provide services to their elders comparable to services offered to other older adults by AAAs.
AAAs also administer the federal National Family Caregiver Support Program, which offers caregiver counseling, support groups, and other services.
The National Association of Area Agencies on Aging (n4a) supports the national network of 622 Area Agencies on Aging and 246 Title VI Native American aging programs. To find the nearest AAA, the website has a two-step process: First, search by your city and state or zip code, and then scroll through the state’s listings to find your city, town, or county.
Assessing Assisted-Living and Rehabilitation Facilities
Unlike nursing homes, which are governed by federal as well as state regulations, assisted-living facilities are subject only to state regulation, and not every state has regulations in place. There is no handy website to compare all assisted-living facilities and no all-inclusive listing. So you’re largely on your own in searching for information about assisted-living facilities. However, some websites do have limited state-by-state information:- Argentum (formerly the Assisted Living Federation of America): This website has a list of its member organizations in several categories: assisted-living facilities, independent-living communities, nursing homes, continuing-care communities, and Alzheimer’s care communities. You can find member organizations in your community by clicking on your state in the map or by scrolling through the alphabetical list below the map.
- The Commission on Accreditation of Rehabilitation Facilities: This is an independent nonprofit accrediting agency of health and human services in aging services, medical rehabilitation, durable medical equipment, and other areas. It lists accredited providers, including continuing-care retirement communities, by zip code, city, state, name, program type, or keyword. It has special lists for brain injury, stroke, and spinal cord injury.
- Leading Age: Leading Age, a membership organization of nonprofit organizations and businesses, can guide you to its members who run assisted-living facilities as well as continuing-care communities, home- and community-based services, nursing facilities, and senior housing.
- The National Center for Assisted Living: This affiliate of the American Health Care Association, which is an association of long-term and post-acute care providers, has a list of state-by-state affiliates.
Finding Services and Housing Options through Eldercare Locator
The Eldercare Locator website is a basic resource. Funded by the federal Administration on Aging and administered by the National Association of Area Agencies on Aging (n4a), Eldercare Locator has information on many community services and housing options. The most common inquiries it receives are on general aging resources, financial assistance, transportation, housing options, and in-home services. Go to Eldercare Locator for a list of the types of services that you can access through Eldercare Locator.
You can search the Eldercare Locator site by city, state, or zip code, or you can call 800-677-1116. An information specialist is available Monday through Friday, 9 a.m. to 8 p.m. Eastern time. You can also start an online chat with a representative by clicking on the link on the home page. Spanish-speaking information specialists are available.Eldercare Locator information specialists connect older adults and caregivers directly to local Area Agencies on Aging, Title VI Native American aging programs, Aging and Disability Resources Centers, and other pertinent aging resources nationwide.
Getting Support for Family Caregivers
Among its many caregiver resources, AARP has a list of local caregiving resources. The guides are listed by state and where appropriate by city.The Family Caregiver Alliance, a San Francisco–based nonprofit dedicated to assisting family caregivers of all kinds, has a Family Care Navigator with an interactive map that lists many resources by state. Some are for support services for caregivers, and others are for the family member who needs assistance with housing, legal assistance, and disease-specific support. The site also has a list of common questions, such as “Can I get paid to care for a family member?” Clicking on the question takes you to an answer with further information and other resources. Where available, these resources are listed by state as well.
Modifying Your Home with Rebuilding Together
Aging in place often requires home modification. Rebuilding Together is a national network of local Rebuilding Together affiliates, corporate and individual donors, skilled tradesmen and associations, and almost 200,000 citizen volunteers. Rebuilding Together provides critical repairs, accessibility modifications, and energy-efficient upgrades to low-income homes and community centers at no cost to the service recipient.To find an affiliate in your area, go to this interactive map. Click on the PDF for lists in your state, or contact the national office at [email protected].
Getting Information on Medicaid in Your State
Medicaid, the federal-state program for low-income people, is the primary payer for long-term care services in the community and in nursing homes. The federal rules require some services to be provided (hospital care, for example), but states can choose what additional services they want to offer. The federal website has an interactive map that takes you to your state’s Medicaid program and gives information about changes to the Medicaid program under the Affordable Care Act (ACA).
Calculating Costs
You need accurate information about the costs of various options. You can find basic information about places you can receive care, what to expect, and how to find local providers at the Centers for Medicare & Medicaid Services (CMS) website. The same link takes you to an LTC Pathfinder with information based on your age.Another source is the Genworth Financial annual survey of costs of long-term care. The 2017 survey is available. It has an interactive map of states, including 437 regions, and additional information about how the survey is conducted. You can also download the data with an app, which may be handy if you are visiting several facilities and want to compare costs. AARP also has a Long-Term Care Calculator.
Finding Your State’s Advance Directives
Advance directives is the generic term for documents that set out the types of medical treatment a person wants or doesn’t want if he cannot speak for himself. Advance directives also name the person who is authorized to make healthcare decisions in that situation. Each state has its own legal form for this purpose. In addition, some people want to add documents such as Five Wishes that outline in more detail their preferences. But only the state’s official advance directive document has legal weight.Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life. It provides free advance directives and instructions for each state that can be opened as a PDF file. These documents are also available on the AARP website.
If you have any legal questions regarding these documents, contact your state attorney general’s office or an attorney.
Caring Connections warns that due to formatting and printing requirements, for some states a blank page appears in the Acrobat Reader as the first page. This does not mean the document has not loaded correctly. Use the navigation toolbar to go to the next page. If you have any questions, you can call Caring Connection’s help line at 800-658-8898 or send an email to [email protected].
If you spend time in more than one state, you should have advance directives that are legally recognized in all these states.
Solving Problems through an Ombudsman
Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes, and assisted-living facilities. Ombudsmen provide information about how to find a facility and what to do to get quality care. They are trained to resolve problems. If you choose, the ombudsman can assist you with complaints. But unless you give the ombudsman permission to share your concerns, these matters are kept confidential. Under the federal Older Americans Act, every state is required to have an ombudsman program that addresses complaints and advocates for improvements in the long-term care system.The ombudsman program is administered by the Administration on Aging. The network has 8,813 volunteers certified to handle complaints and 1,167 paid staff. Most state ombudsman programs are housed in their State Unit on Aging.
A long-term care ombudsman performs the following tasks:
- Resolves complaints made by or for residents of long-term care facilities
- Educates consumers and long-term care providers about residents’ rights and good care practices
- Promotes community involvement through volunteer opportunities
- Provides information to the public on nursing homes and other long-term care facilities and services, residents’ rights, and legislative and policy issues
- Advocates for residents’ rights and quality care in nursing homes, personal care, residential care, and other long-term care facilities
- Promotes the development of citizen organizations, family councils, and resident councils
Resolving Complaints through BFCC-QIOs
If you have a complaint or a problem with medical care — for example, you’re a Medicare beneficiary and you want to appeal a hospital discharge that you think is premature — you may turn to a Beneficiary and Family-Centered Care Quality Improvement Organization (BFCC-QIO) for help. BFCC-QIOs are private, mostly not-for-profit organizations, which are staffed by professionals, mostly doctors and other healthcare professionals, who are trained to review medical care and help beneficiaries with complaints about the quality of care and to implement improvements in the quality of care available throughout the spectrum of care. The Centers for Medicare & Medicaid Services (CMS) contracts with two organizations (Livanta and Kepro) that cover different states, as well as the District of Columbia, Puerto Rico, and the U.S. Virgin Islands, to serve as that state/jurisdiction’s BFCC-QIO contractor.
By law, the mission of the BFCC-QIO program is to improve the effectiveness, efficiency, economy, and quality of services delivered to Medicare beneficiaries. The core functions of the program are- Improving quality of care for beneficiaries
- Protecting the integrity of the Medicare Trust Fund by ensuring that Medicare pays only for services and goods that are reasonable and necessary and that are provided in the most appropriate setting
- Protecting beneficiaries by expeditiously addressing individual complaints, such as beneficiary complaints, provider-based notice appeals, violations of the Emergency Medical Treatment and Labor Act (EMTALA), and other related responsibilities as articulated in BFCC-QIO-related law