Home Health Care: A Guide to Resources

By Pat Kaufman

Originally published in The CFIDS Chronicle - Spring 1996

Reprinted with permission from Take Care!, published by the National Family Caregivers Association. For more information, please contact NFCA at 800/896-3650 or 9621 East Bexhill Drive, Kensington MD 20895-3104.

John Kelley has been caring for his wife Barbara since her first stroke five years ago. Barbara now needs 24-hour care including physical and speech therapy. John wants to keep his wife at home, but he knows he can't handle everything by himself.

Mary Charles is 72 years old. She was recently diagnosed with Alzheimer's disease and has just moved in with her daughter Janice. Mrs. Charles can do many things for herself, but Janice, who works full time and has her own kids to care for, can't always be there to take her mother to the doctor, fix her lunch and keep her company.

Sarah Hess thinks that heaven must be just having time to sit down and read a book, but such leisure is not in the cards. Sarah works part time and has three teenaged children, one of whom has muscular dystrophy and needs help with virtually everything. Lately Sarah has found that she's so tired, she's not able to concentrate very well, either at home or at work.

All of the caregivers in these examples were able to solve their problems the same way -- with home care. But each one used a very different facet of this growing and diverse industry.

The Kelleys' doctor certified Barbara as needing skilled nursing care, and she became the beneficiary of the services of a visiting nurse, a speech and physical therapist, a home health aide and a dietician, all supplied by a home health care agency and paid for by Medicare.

Mary Charles' daughter put an ad in the local paper to find someone to be a companion for her mother. She had to interview five people and take time to check and recheck references, but after six weeks, she found a wonderful woman to come in for a few hours each day to fix a meal and keep her mother company.

Sarah Hess' son qualified under his county's in-home care program. A state-trained aide comes in three times per week to bathe him, give him dinner and straighten up his room, jobs Sarah doesn't have to do when she comes home from work.

What Is Home Care?
Home care is a general term that represents a wide range of services performed in your home to help you and your care recipient. The skills and duties of home care personnel vary, but all have one thing in common -- they make it possible for care recipients to remain independent and stay at home in a safe, monitored environment. In the process, they also provide caregivers with a chance to replenish their depleted physical and emotional reserves.

Home care personnel include:

• Professional nurses who provide skilled medical care, including giving medications, taking vital signs, changing bandages and other nursing duties.
• Therapists who work with patients to restore their motor, speech and cognitive skills.
• Home care aides who provide custodial services such as bathing, making meals, light cleaning, running errands and transporting patients to the doctor.
• Companion/homemakers who help with chores around the house but usually do not perform personal duties for the care recipient.

Getting Started with Home Care
The first step is to make sure you and your loved one are comfortable with the idea of someone else taking on some of the tasks that you've been doing by yourself. Getting over these psychological hurdles isn't necessarily easy, but they must be dealt with before help can be obtained.

Talking about what tasks someone else might be doing will also help you with the next step, which is determining exactly what type of home care you are looking for. Do you need a nurse to change bandages and monitor equipment, or would a companion/homemaker be more appropriate in your circumstance? If someone is just coming home from the hospital, you'll receive guidance in these matters from the hospital discharge planner. If not, you'll most likely be making these decisions yourself or in consultation with your care recipient.

Once you've determined getting home care help is best for all concerned, questions about where to find it, how much it will cost and whether it is covered by insurance or provided by government programs must be addressed.

If you're like the majority of caregivers, you need the most help with custodial care -- the very type of care that is generally not covered by health insurance programs. So unless your loved one has long-term-care insurance with a home care provision, your access to home care will be limited by what you can afford. You may be able to get some help, as Sarah Hess did, from state programs that take into account your ability to pay for services, but more often than not the costs of home care services will have to come out of your own pocket.

Even if your financial resources are limited, don't automatically decide you can't afford to get help. Sandy Kursban, president of Family and Nursing Care, a Silver Spring, Maryland, registry that provides thousands of hours of in-home care each week, advises that some help is better than none. "Maybe you can't afford all the hours of home care that you need or want, but take a long look at what you can afford. Even if it's just a few hours of help every other week, or even once a month, do it. Getting a break, even a short one, can make a difference," she says.

Choosing the Right In-Home Care
How do you find the right home care solution for your family, the one that provides the services you need at a price you can afford? There are several ways of tapping into the home care network. Here is a look at some of the most common ones and what you need to think about when considering them:

Home Care Agencies: Not all home care agencies provide the same variety and levels of service, so make sure the agency you are considering has all the resources you need. Also make sure you are not paying for overhead the agency incurs for providing specialized services you aren't going to be utilizing. If your care recipient is approved for skilled care that Medicare will pay for, it's vital that the agency be Medicare certified. This ensures that the agency has met federal minimum requirements. If your loved one only needs companion/homemaker care, Medicare certification may not be an important factor in your decision.

Some agencies are accredited in addition to being certified. Well-known accrediting organizations are the National League for Nursing, the Joint Committee for Accreditation of Healthcare Organizations and the National Foundation of Hospice and Home Care. This type of certification tells you that the agency conforms to national industry standards, and there is always comfort in knowing you are dealing with an organization that has proven its worth to its peers.

Ann Howard, executive director of the American Federation of Home Health Agencies, reminds consumers to always go beyond the accreditations and licenses and ask the following questions when trying to decide which agency to use.

1. How much staff turnover occurs?
2. What is the grievance procedure if a problem arises with an employee?
3. Can a representative of the agency be reached 24 hours a day to deal with unexpected problems?
4. In general, what is the agency's response time when called with a problem?
5. If my payor source disallows the medical services I'm receiving, does the agency work to help me regain the benefits so I'm not deprived of vital services?
6. How long has the agency been in business?
7. May I have some references?

What do home care services cost through an agency? Some agencies charge flat fees ranging from $100 to $120 per visit. Others have a minimum four-hour fee. The actual hourly rate will vary depending on the services you require and the part of the country you live in, but don't be surprised to find rates ranging anywhere from $13 to $25 per hour.

Privately Employed Home Caregivers: Instead of using a home care agency, you may wish to hire a home care worker on your own, especially if you are not looking for skilled medical care, but rather for someone to act as a companion or personal aide on a regular, long-term basis. In those situations, bypassing commercial agencies can often result in significant financial savings. You can start your search with an ad in the newspaper. Also check with the nursing staff in your doctor's office, a geriatric care manager or a hospital discharge planner for reliable candidates.

In her excellent book, Hiring Home Caregivers (see resources further down), D. Helen Susik, a professional gerontologist, offers a comprehensive and practical guide that takes you through each step of the hiring process. While Susik is a proponent of hiring your own home caregiver, she readily points out some of the drawbacks of hiring privately: 1) you (yourself) must do substantial background checks to ensure that the employee has no record of criminal activity or abuse; 2) you must be prepared to do all the paperwork necessary to comply with tax and insurance laws affecting employees; 3) you may not get candidates with the same level of training and licensure as those who work for home care agencies; and 4) you do not have the guarantee of substitute help if your home caregiver is ill or on vacation.

Home Care Registries: A good middle ground between home care agencies and hiring help on your own is a home care registry. Sandy Kursban, who founded her registry 26 years ago, explains the benefits. "We screen, interview and reference-check all our staff and require a certain standard of experience before we add them to our list. You know you're getting someone safe and reliable." Because members of the registry are independent contractors, their services are available at prices that are usually lower than agencies, about $10 per hour.

Government In-Home Aide Services: Many states and counties offer home care services to residents who are aged or disabled. Applications for aid are evaluated by state social workers who rank a candidate's needs according to a number of objective criteria including whether the care recipient lives alone and what activities he or she can perform. Care recipients who qualify are provided with home care aides who can give personal (not medical) care, do light cleaning, change linens, prepare meals and transport or escort the patient to the doctor.

The aides are trained and licensed by the state. Fees are usually set on a sliding scale and can range anywhere from $1 to $20 per hour depending on the care recipient's ability to pay.

To find out what services your state offers, call your state Department of Human Resources or state Health Department. But be forewarned: usually these agencies are overwhelmed with applications and the waiting list can be long.

Hospice: If you are caring for a loved one with a terminal illness, Hospice offers a number of services that can help. To qualify for in-home hospice care, you must have a doctor certify that your loved one is no longer seeking curative treatments and that he or she has "months rather than years to live." Depending on your situation, Hospice will provide a social worker, a nurse who comes regularly to check medicines and vital signs, volunteers to sit with your loved one while you run errands or just get some rest, and home health aides who will bathe and clean the patient, tidy up the room and fix a meal if necessary.

Payment is usually through Medicare or private insurance. When you call your local Hospice office, a home healthcare coordinator will work with you to arrive at the best combination of services for your situation.

There are no easy answers to the search for home care services, especially custodial ones, but one thing is perfectly clear: more affordable home care services is something that caregivers want. Until they materialize, caregivers are going to have to continue to use a lot of energy trying to find the best solution for themselves and their families.

Pat Kaufman is a legal editor and freelance writer. She is a regular contributor to Take Care!


Resources On Home Care
How to Choose a Home Care Agency: A Consumer's Guide. This pamphlet is available in its entirety online or by contacting the National Association for Home Care at 228 Seventh Street, SE, Washington, DC 20003, phone (202) 547-7424.

Hiring Home Caregivers: The Family Guide to In-Home Eldercare. by D. Helen Susik, MA. Impact Publishers, San Luis Obispo, CA, )1995. Can be ordered direct by calling: 800-246-7228.

Someone Who Cares: A Guide to Hiring an In-Home Caregiver. The Center for Applied Gerontology, 3003 W. Touy, Chicago, IL 60645; 312/508-1075.