Andrew worked for the local school district for twenty years. He enjoyed life with his wife, Anne, who was trained as a nurse. Anne worked for a few years when they were first married, but after the birth of twin girls, followed by two boys, Anne became a full-time mother and homemaker. They lived comfortably, although they were not wealthy by any means. The two regarded their children as their greatest blessing, but at the same time, they looked forward to the time when their children would start their own families and become responsible adults. Anne and Andrew often joked about the empty nest and the chance for a “second honeymoon” and a life of travel.
It was a real shock to Andrew when Anne was diagnosed with Lou Gehrig’s disease. He had retired from the bank only two years earlier. The doctors took an agonizingly long time to rule out other explanations, but finally her diagnosis was confirmed. In the initial stages, Andrew and Anne managed alone and did not feel the need to ask others for help. But lately Anne sleeps more and more as the disease progresses and Andrew finds he loses concentration while working at his daily tasks. In spite of frequent telephone conversations with his children, Andrew feels lonely and tired.
Andrew and people like him face difficult issues when a loved one, particularly a spouse, develops a terminal disease and is no longer independent. Andrew is his wife’s primary caregiver, but he needs assistance to help him properly care for his wife and himself. This publication is designed to acquaint you with some services that may be appropriate for Andrew and his wife.
Seeking Help for Services
When we need assistance, studies suggest there is a pattern to our help-seeking behaviors. For help during short periods of time, we generally turn first to our informal network (spouse and children, followed by friends and neighbors). When help is needed over long periods of time, we tend to turn to a formal network of agencies and organizations for assistance (Suitor and Pillemer, 1990). The community-based services provided through formal networks are designed to help older adults and their families to remain living in their community, retaining as much independence and quality of life as possible.
Paying for Services
Before you consider utilizing community-based services, you need to be aware of how services are paid for and which services your insurance company covers. Most community-based services are not covered by medical insurance, thus requiring out-of-pocket expenses. Medicare is designed to support hospitalization and medical treatment, not home health care. Those eligible for Medicaid, a state health insurance plan for people with low incomes, may find that some community-based services are available to them at reduced or no-cost rates. For determining eligibility for Medicaid services, contact your local department of social services.
Information and Referral and Assistance (I&R/A)
Sources for locating and linking to community-based services are now offered by the U.S. Administration on Aging as well as state and local agencies, including your local Area Agency on Aging (AAA). I&R/A services typically are viewed as one-stop sources where information, referral, and assistance about local services and resources can be immediately accessed by speaking to a specialist over the telephone or by searching an Internet database.
The Eldercare Locator is a national information service available at www.eldercare.gov or by calling (800) 677-1116 toll-free. Spanish-speaking information specialists are available.
In Virginia, dial 211 on your telephone to access 2-1-1 Virginia for information about community-based services and programs in your area.
Senior Navigator operates an Internet site at www.seniornavigator.com that lists information about available services across the state.
The local AAA is also a rich source of information for programs in your area. Contact information can be found in local telephone directories.
The information below will help you become familiar with more community-based services for older adults and their families who may need assistance in one or more areas of their lives. Think of Andrew and Anne’s situation as well as your own when considering the following services.
Adult Day Care
Adult day service (ADS) programs serve two purposes: provide basic care, activities, and socialization to enhance quality of life of the person attending the program, and respite for the primary caregiver. More than 75 percent of the nations 3,500 adult day service organizations are nonprofits and serve a small clientele. Most programs are affiliated with larger organizations such as medical facilities, nursing homes, and local senior centers. One-half of participants experience cognitive limitations, and one-third required nursing services at least weekly (NADSA, 2007). Adult day services provide excellent respite opportunities, but transportation and hours of service make them problematic for some caregivers.
Visit the National Adult Day Services Association website at www.nadsa.org for information on how to select an adult day center.
To locate a licensed adult day service in Virginia, visit the Department of Social Services website at www.dss.virginia.gov/facility/search/adc.cgi
Would adult day services be appropriate for Anne and Andrew?
Geriatric Care Management
Geriatric care managers identify and coordinate local services to meet older adults’ physical and social needs. Care management services should be client-centered and result in a care plan that promotes the personal safety, security, and welfare of the individual while maintaining the person’s dignity, independence, and quality of life. Care managers also should facilitate communication among the older adult, family members, and professionals to avoid inappropriate placements into long-term care or hospitalizations (Wacker and Roberto, 2008). Some insurance providers, as well as Medicaid, may pay for care management services. Private care management is available to people with the assets to pay.
To locate a geriatric care manager in your area, visit the National Association of Professional Geriatric Care Managers’ website at www.caremanager.org.
How would care management benefit Andrew and Anne? What services would you recommend if you were a care manager?
Emergency Response Systems
A Personal Emergency Response System (PERS) is an electronic device used to help individuals remain living in their homes by allowing the owner to summon help in an emergency. When the device is activated, a radio signal is transmitted to the phone which is preset to call a response center, which in turn notifies local emergency services. Most insurance companies do not pay for PERS units; however, elderly and disabled adults receiving Virginia Medicaid may receive the PERS benefit. Out-of-pocket expenses for the unit reach over $1,500 not including the monthly monitoring fee. Rentals are available through some hospitals and social service agencies.
The Federal Trade Commission website provides additional information about PERS units and important questions to ask when buying a system. View it at www.ftc.gov/bcp/conline/pubs/services/pers.htm.
How would Anne benefit from having a PERS unit?
Older adults who are unable to prepare meals can benefit from home-delivered and congregate meal site programs. Meals on Wheels is a nationally recognized program established in most areas. Nutritionally balanced meals are provided to seniors on a daily or regular basis. Some meals are delivered hot while others are packaged for use later in the week. Local community agencies often sponsor congregate meal sites to provide nutritious meals as well as socialization opportunities on a regular basis (Wacker and Roberto, 2008).
To find a Meals on Wheels program in your area go to www.mowaa.org or contact your local agency on aging for information on available meal services.
How would Andrew and Anne benefit from home-delivered meals or meals provided at congregate sites?
Home Health Services
Home health services provide physical, medical, and emotional support to adults with a medical need in their own homes. The program allows adults to remain in their homes and often delays institutionalization. Persons receiving home health services typically need help with bathing, dressing, and transferring from a chair or bed. Other assistance may include light housework, taking medications, preparing meals, and shopping. To be eligible for services, a physician must recognize a medical need and order home health care. Medicare pays for persons who qualify as long as services are medically reasonable and necessary. In most states, Medicaid will also cover certain home health services for persons who qualify (Wacker and Roberto, 2008).
For a listing of local home health services in your area refer to the yellow pages of your local phone book and look under the heading home health care providers or contact the local agency on aging or one of the I/R&A resources mentioned above.
What types of services do you think Anne is eligible to receive?
Older adults are often involved in unforeseen legal problems such as custody issues regarding raising grand-children; property disputes; employment issues, such as age discrimination; and income-related questions related to health insurance, Medicare, Medicaid, Social Security, Supplemental Social Security, pensions, Veterans’ benefits, and housing issues. When preparing for future health care, attorneys should be contacted to draft wills and advance directives such as powers of attorney and living wills. When the cost of hiring an attorney is not feasible, free or reduced rate legal services can be obtained through local area agencies on aging, legal hotlines, public legal aid programs, and pro bono services offered through local bar associations and organizations. Many firms are willing to take on a number of pro bono cases, which may include disputes involving older adults.
For additional information, visit the Virginia Legal Aid website at www.vlas.org.
What legal services might Anne and Andrew need? What types of assistance with legal matters do you need?
Respite services provide short-term support by providing a caregiver with relief from responsibilities for a period of time. Respite services are provided through for-profit and nonprofit agencies and may be available during the day, evening, or on the weekends. Generally, health insurance plans do not cover respite services, with the exception of Medicaid. The most common form of respite care tends to occur in-home and during the day because it ensures the least amount of disruption to the older adult’s daily routine (Conlin, Caranasos, and Davidson, 1992). Flexibility in arranging respite services is dependent on the availability of agency staff. Some caregivers may prefer respite services on weekends while others may desire support during the night while they are sleeping. Regardless of when services are utilized, they should coincide with the caregiver’s need for relief.
To find out who provides respite services in your area, refer to the yellow pages of your local phone book and look under the heading home health care providers or contact your local agency on aging or one of the I/R&A resources mentioned above.
What respite services would be appropriate for Andrew? Would he accept them? Why or why not?
Senior Center Programs
Senior center programs are designed to help adults remain independent and connected to their communities. Frequently associated with local parks and recreation departments, programs offered may vary among locations but generally include activities that promote lifelong learning, health and wellness, and socialization. Many senior centers offer a mid-day meal as well as free transportation to and from the center. Fees to attend a center are generally nominal and frequently underwritten by town and city budgets. Some programs offer sliding fee scales to encourage service to anyone desiring it (Wacker and Roberto, 2008).
For more information about what senior programs are offered in your area, check with your local parks and recreation program, the local public library, the community newspaper event section, or the local agency on aging.
Would Andrew and Anne benefit from attending a senior center program? Why or why not? What type of senior center program would you attend?
In some communities, local law enforcement agencies sponsor a daily telephone reassurance program for older or vulnerable residents. At a designated time each day (usually morning), a phone call is made to the individual. While the caller spends a few minutes chatting, they are assessing the person for potential health or environmental problems that may require attention. In emergency situations, emergency personnel are dispatched immediately. If warranted, the caller may help the individual make a plan to seek assistance for a problem. Family members may be contacted if the individual has previously granted permission. Telephone reassurance services provide peace of mind to family members who do not live nearby.
To check on whether this program is available in your community, contact local law enforcement or the local agency on aging.
How would Andrew and Anne benefit from a telephone reassurance program? How would this program provide peace of mind to their children? Does your community offer this service?
Not being able to drive or having a way to get around creates a hardship for many older adults. Seeing friends and family, participating in social activities, and even seeking medical help occurs less frequently when transportation is not available. Typically, urban areas have more mass transit options and additional services than rural areas. However, most communities have some transportation options in place to help seniors reach their medical appointments.
To resolve your transportation questions, contact the local transit system to learn about senior ride programs with reduced fares, flexible schedules and flexible routes including door-to door service. The local agency on aging can provide information on the local senior transportation network in the area. Some insurance programs, such as Medicaid, cover transportation costs related to medical appointments. Contact your local department of social services for more information on Medicaid eligibility and transportation options through that program.
In what ways could a transportation service be helpful to Andrew and Anne? Would you be willing to take public transportation to wherever you needed to go?
Some Final Thoughts
With the growing number of services in place for older adults, it is impossible to list all opportunities in one document. Scan your local telephone book or contact your local area agency on aging to learn about the specific community services available in your area.
If you have questions or are interested in other human development information on older adults and their families, contact your local Virginia Cooperative Extension office. Family and Consumer Sciences agents offer a variety of educational programs related to family life, personal fitness, nutrition, and food safety.
If you would like further information on topics concerning older adults, please see:
Elder Abuse Alert - Considerations About a Hidden Problem, Virginia Cooperative Extension publication 350-251, http://pubs.ext.vt.edu/350-251/
Living Options For Adults Needing Assistance, Virginia Cooperative Extension publication 350-254, http://pubs.ext.vt.edu/350-254/
Conlin, M., Caranasos, G., and Davidson, R. (1992). Reduction of caregiver stress by respite care: A pilot study. Southern Medical Journal, 85, 1096-1100.
National Adult Day Services Association. (2007). Adult day services: The facts.
Retrieved April 10, 2007, from www.nadsa.org/adsfacts/default.asp
Suitor, J.J., and Pillemer, K. (1990). Transitions to the status of family caregiver: A new framework for studying social support and well-being. In S.M. Stahl (Ed.), The legacy of longevity (pp. 310-320). Newbury Park, Calif.: Sage.
Wacker, R.R., and Roberto, K.A. (2008). Community resources for older adults: Programs and services in an era of change. Thousand Oaks, Calif.: Pine Forge Press.
This publication is based on a previous one by Pamela B. Teaster and Karen A. Roberto.
Reviewed by Novella Ruffin, Extension Specialist, Virginia State University
Virginia Cooperative Extension materials are available for public use, reprint, or citation without further permission, provided the use includes credit to the author and to Virginia Cooperative Extension, Virginia Tech, and Virginia State University.
Issued in furtherance of Cooperative Extension work, Virginia Polytechnic Institute and State University, Virginia State University, and the U.S. Department of Agriculture cooperating. Edwin J. Jones, Director, Virginia Cooperative Extension, Virginia Tech, Blacksburg; M. Ray McKinnie, Administrator, 1890 Extension Program, Virginia State University, Petersburg.
May 1, 2009