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Nursing Home 101: Being an Effective Advocate

Mom or Dad Never Needed You More

By Joan E. Lisante
ConsumerAffairs.com

September 22, 2005
Many adult "kids" with parents needing residential care think that, once they find a facility that doesn't make them reach for the silver bullet, the job's done. Think again.

Getting into a quality substitute for home is just the beginning. Once Mom or Dad checks in, you'll assume a new role: elder advocate. Many older people aren't terribly assertive about getting their due, whether it's dietary changes, extra therapy or a seat on that field trip bus. And when it's a matter of both health and happiness, someone needs to be pushing for the full package.

Of course, residential facilities are often understaffed and residents can be needy. As a consumer, you've got federal (and sometimes state) law on your side to insist that Mom or Dad get the quality of care they deserve. The Code of Federal Regulations (CFR) and your state law contain many protections.

Here are a few eye-openers from the Code of Federal Regulations:

• Care Plan Each nursing home resident is entitled to a personalized "care plan," based on their needs. Such a plan must offer services that allow a person to maintain her highest practicable physical, mental and psychosocial wellbeing. This means that, for example, if Dad wants to sleep until 10:00 am instead of rising at the official 6:00 am call, he is allowed to do so. On a practical note, some families hire a part-time aide or appear themselves to ensure that a request is honored.

• Visiting Hours "Family members can only visit during visiting hours." Not so! 42 CFR 483.10(j) allows immediate family the right to visit at any time. And it may be to your advantage to visit during off-hours, to see what things are like when visitors aren't expected.

• Who Decides "The care-taking staff determines the level of care Mom or Dad will receive." Not so! In reality, the mandatory care plan drives the level of care and type of services a resident should get. Federal law requires that a facility do a full assessment of a resident's condition within 14 days of admission, and at least every 12 months after that. A care plan should include measurable objectives and timetables.

• Making Progress You may hear that if Mom or Dad isn't making progress, the home need not offer therapy. Assuming that the resident needs "skilled nursing services" or "skilled rehabilitation services," a facility is charged with trying to maintain his condition. Any facility needs to make sure that a person's ability to carry out activities of daily living doesn't deteriorate. The only exception: if the person's clinical condition makes deterioration unavoidable.

• Feeding Tubes They can be used only if absolutely necessary, not if a resident eats slowly or needs extra help cutting or eating food. The facility must provide whatever help a resident needs to eat normally.

• Wandering Relatives In the bad old days, staff sometimes tied residents into chairs or administered calming drugs to prevent wandering, especially among Alzheimer's patients. Now, nursing homes cannot use convenience or discipline as an excuse for restraining residents. The only legitimate purpose for restraint is to treat a person's medical symptoms.

• One Doctor Fits All "Mom must use the physician assigned to the facility." Not so! In reality, the "free choice" legal requirements include the right to choose one's own personal attending physician.

Financial Matters

• Guarantor "You must sign admission forms as a guarantor or responsible party." Not so! There is no such requirement. 42 CFR 483.12(d) prohibits a facility from forcing a third party to be a guarantor for the tab. You are only obliged to apply Mom or Dad's funds to the bill, not your own.

• Custodial Care "Since your relative needs custodial care only, Medicare won't reimburse the home." Not so! In reality, Medicare can pay for up to 100 days, provided a resident either is a) hospitalized for at least 3 nights, or b) needs skilled nursing or skilled rehabilitation. (As of this year, days 21-100 have a daily co-payment of $114.) Even if the facility nixes the need for skilled nursing care, a resident can appeal.

• Non-Medicare Beds "Once Dad is no longer eligible for Medicare reimbursement, we can transfer him to a non-Medicare-certified bed." No! A "Medicare certified" bed can be used for patients paying privately or through Medicaid, and a resident asked to move against his will can refuse.

• Fixed Fees "Extra charges are set by the facility, and are not negotiable. You have to pay extra for services like bath soap, denture cleaner or hospital gowns." Wrong! A facility's admission agreement should include covered and exempt or "private pay" charges, which are laid out in federal law. See 42 CFR 483.10 ("Resident rights") for details.

• Bed Holds Say your parent/relative leaves the nursing home for a hospital stay and the facility claims that his "bed hold" has expired when you try to have him readmitted. Although Medicaid and Medicare won't pay for "bed holds" in many states, private payment is allowed. And even if a "bed hold" expires, a facility must readmit a resident eligible for Medicaid reimbursement from the hospital if that facility has an available bed.

These are just a few of the misconceptions about nursing home and assisted living facility obligations.

Savvy consumers are aware that about 80% of nursing home residents enter from a hospital and hospitals are legally required to provide a discharge plan to any patient needing or requesting one. Your physician can also request one. Often, a well-thought-out discharge plan will set the stage for more focused, organized nursing home care.

More Info

For more information, see:

• www.medicare.gov/NHCompare, which compares nursing homes within a given geographical area;

• AARP's checklist on what to look for in a nursing home, available at www.aarp.org/bulletin/longterm.

• The Legal Information Institute at Cornell University Law School, an excellent resource for federal and local law. See www.law.cornell.edu.

The author is an attorney in Fairfax County, Virginia

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