The Dignity They Deserve
Guiding seniors (and their families) through the long-term care process
The reality of a senior individual’s move to a long-term care facility is usually difficult to accept not only for the future resident but for his or her family as well. Planning for this move can be a long, emotional journey requiring great attention to detail. The extraordinary number of senior living options combined with a constant concern for one’s well-being makes long-term care an overwhelming prospect for all parties involved.
The good news is that long-term care has evolved significantly since the passage of Medicaid/Medicare in 1965. At that time, several facilities opened with very little regulation, and abuses in long-term care were frequently reported. To address these serious problems, federally funded long-term care ombudsman programs were created in 1972 to advocate on behalf of long-term care residents and to identify, investigate and resolve complaints made by or on behalf of long-term care residents.
The mission of long-term care ombudsman programs like the Harris County (Texas) Long-Term Care Ombudsman Program at The University of Texas Health Science Center at Houston (UTHealth) School of Nursing is not only to guide seniors and families throughout the process of finding the right living situation but also to work with residents, families and facility staff to improve the quality of life for residents in long-term care.
Bringing care for seniors to the forefront
Most long-term care ombudsman programs are composed of specially trained volunteers. As the only program of its type housed within a university, the Harris County Long-Term Care Ombudsman Program at UTHealth includes as many as 70 volunteer ombudsmen at one time. “Our volunteers are the backbone of our program. With only 3 staff members, our many dedicated volunteers make visits to long-term care facilities to ensure that the rights of the residents are being protected and that their needs are being met,” explains Harris County program director Carmen Castro. “We have some ombudsmen who have been with us for as long as 15 years, and they greatly assist us with the advocacy that needs to be done.”
To become certified as an ombudsman, the Harris County program requires volunteers to be at least 18 years old and to undergo more than 30 hours of classroom and in-service training over the course of a month. Castro says most volunteers are retirees, although more young people are becoming involved.
Harris County ombudsmen oversee almost 90 licensed nursing homes in their area. They are federally mandated by law to visit all the nursing homes at least four times a year as well as provide coverage for more than 260 assisted-living facilities. Most of these facilities are personal care homes, which are private, converted homes licensed to serve between four and 17 residents at one time. The amount of visits the Harris County program makes to senior living facilities is more than what any other local agency provides.
“Our standard is we try to visit our nursing homes each month or more frequently with most volunteers making weekly visits,” Castro says. “With assisted-living facilities, we respond to all complaints we receive, and we do our best to make it to each of them once a year.”
In general, Castro says that most long-term care ombudsman programs serve long-term care residents and their families by:
- listening to their needs and problems
- visiting residents and meeting their families
- helping residents articulate needs to others
- offering ideas and options
- investigating and resolving complaints
- advocating for system and legislative changes
- educating residents of their rights
- monitoring conditions and care
- providing a voice for those who are unable to speak for themselves
Choosing the right living arrangement
The first—and most important step—in transitioning to a senior living facility is to find the right living arrangement based on the needs of the resident and his or her family. Terminally ill seniors may wish to choose hospice care. However, seniors who cannot or no longer want to live in their homes and are seeking long-term care should consider a nursing home or an assisted-living environment.
Nursing homes are for individuals with long-term illnesses or conditions that cannot be cared for at home. In a nursing home, residents are under the 24-hour care of licensed, registered or certified nursing staff. Seniors requiring the care of skilled nurses are those who are bed-bound, need a respirator, or have wounds that are not healing and require daily care. In addition, some residents of nursing homes are there for a short period of time receiving physical therapy, occupational therapy or other rehabilitation services. Medicare generally pays for up to 100 days of skilled nursing in a nursing facility.
Although there are different types of assisted living for seniors, in general it is an establishment (including some that are part of retirement communities) or environment that provides care for elderly individuals who need help with everyday tasks, such as assistance with meals, dressing, movement, bathing or administration of medication.
In determining what kind of long-term care situation best suits your needs, Castro says the most common factors in making this decision are cost, location and amenities the facility may offer. With cost, you should first establish the savings and assets of the aging person. From there, decide who is going to pay for the care and if, for instance, it will require a joint effort among family members. Payment assistance options may also be available. For example, long-term care insurance is available from some insurance companies.
Also, study up on Medicare/Medicaid, especially in regards to nursing home expenses. Assisted-living costs are generally paid for out-of-pocket or by long-term care insurance. Medicare does not cover assisted living, and in Texas, for example, the only way that Medicaid covers assisted living is through a waiver program. For Harris County seniors and their families, Castro says the Harris County Area Agency on Aging has benefits counselors that can provide consumers with guidance regarding services and programs that can help pay for long-term care services, both in long-term care facilities and in the community. (The National Association of Area Agencies on Aging website offers a complete list of Area Agencies on Aging nationwide.)
Castro adds that planning ahead is the best way for seniors and their families to prepare emotionally and logistically for the move. “Planning is one of the biggest problems, in the sense that people tend to go into long-term care blindly,” she says. “Planning is very important, just as you would do for retirement. Many times, people end up in a facility without having any idea that this is where they would wind up, and it is usually not the best fit.”
Castro offers the following additional advice to consider when selecting the right living arrangement:
- Be open and honest. Acknowledge feelings. Seniors may feel abandoned or depressed, so try your best to include them in the process. Remind them that you are doing what’s best for him or her.
- Determine medical needs. Is extensive medical care needed? Is there a need for physical or other kinds of therapy? What about help with bathing, dressing, using the restroom, eating and other daily activities? Ask the senior’s health care provider for help in choosing the appropriate care.
- Ask questions. Find out if the facility is licensed and regulated. Most nursing homes and assisted-living facilities are both licensed and regulated, while independent living facilities are not.
- Find out about resident rights in each facility. See section below for more information.
- Compare amenities. Check rooms, meals, common areas, resident activity and demeanor, and staff interactions. Make a pros and cons list.
After making a list of best candidates, Castro encourages families to make both scheduled and unannounced visits to each facility. “Try to speak with residents and, if possible, their family members,” she says. “Ask about their overall satisfaction and what could be improved. It shouldn't take very long to then narrow down the list.”
In addition, there are several other resources available to help your family make the right decision for long-term care. Some states, like Texas, provide quality ratings for long-term care facilities that interested parties can access online. Also, facilities certified for Medicare and Medicaid meet tough federal standards for the health, safety and comfort of its residents. The Medicare Nursing Home Compare website includes a list of these facilities that are Medicare and Medicaid certified.
Protecting Resident Rights
Once you have selected the perfect living arrangement for your loved one, future residents and their family and friends should take time to understand a resident’s rights in long-term care.
In addition, the long-term care facility must make sure you know and understand these rights and notify you of any changes. The rights of a person living in a nursing home or assisted-living facility include:
- confidentiality of records
- right to vote, own property and marry (i.e., constitutional protection)
- knowledge about services and costs
- ability to control personal finances
- participation in care and treatment as well as information on your condition
- refusal of treatment
- environment free from chemical and physical restraints
- environment free from other abuse, neglect and exploitation, such as expectations to perform chores and work
- complaining without fear of retaliation
- ability to communicate freely with everyone
- right to appeal a discharge
In other words, residents enjoy the same rights as all people and deserve the best care possible. However, this isn't always the case, according to Castro.
“Once we begin to work with residents, some of the biggest challenges we tend to see are related to staffing. Limited staffing in a lot of the facilities impacts the quality of care that some residents receive,” she says. “There are no real staffing ratios in regards to direct care workers in Texas, except if it’s a certified Alzheimer’s unit.”
Turnover among staff is also a common problem, Castro adds. “Few facilities have consistency with regard to staffing. The residents get care, but sometimes it’s from someone who isn’t familiar with them or their needs,” she says. “Even if you have long-term staff, there aren’t always consistent assignments. Lack of consistent assignments impacts the ability to provide direct care to residents.”
Protecting resident rights is at the core of what long-term care ombudsman programs do, especially in terms of identifying, receiving and resolving complaints. Castro says anyone can make a complaint on behalf of the resident. She adds that complaints come in many different forms—from self-identification during facility visits to complaints from families or anonymous phone calls.
“Once we receive a complaint by phone, we work to resolve it,” Castro says. “We triage each complaint to determine which facility it is, identify the ombudsman to work the case, and follow up with the individual who called, if possible.”
The Texas Department of Aging and Disability Services has a list of preventive measures to take on behalf of your loved one in long-term care:
- Get to know staff, especially their names and duties.
- Educate staff about the resident’s likes and dislikes, daily routines and interests.
- Attend care plan or service plan meetings.
- Talk to staff about concerns so they can be addressed.
- Keep a log of concerns and actions taken.
- Join or organize a resident or family council.
Long-term care residents have the right to be treated with dignity, respect and courtesy. If you have any questions about long-term care, the rights of long-term care residents, or have a problem with your current long-term care facility, contact your state or local ombudsman representative.