Know the system: long-term care


What comes to mind when you think about long-term care (LTC)? Chances are, you are imagining a nursing home with endless games of bingo, bad food, wheelchairs, bed pans and less-than four-star care. Maybe you know that LTC also refers to personal-care boarding homes and assisted-living and continuing-care communities? These types of long-term care may bring to mind small, cookie-cutter apartments and fewer wheelchairs.

The trend in aging services is for increased emphasis on “aging in place,” supporting older adults through home-care services. This includes various adaptations so that a person can age healthily and safely in their own home. But sometimes the level of care necessary will only be available by moving into a long-term care facility.

For almost every older adult, considering a long-term care facility is filled with stressful questions. What level of care will I need? How will I pay for this? Will my needs be met? Will I feel alone? For LGBT older adults, the anxiety is heightened by fears of discrimination, isolation and mistreatment.

In a study titled, “Stories from the Field: LGBT Older Adults in Long-Term Care Facilities,” respondents shared their fears of discrimination, neglect and abuse by staff in the LTC system. Some of the fears shared by LGBT elders include: Will I be allowed to room with my partner? Will my partner be granted health-care power-of-attorney and/or visitation rights? Will my gender identity and preferred name/pronoun be respected? Will I feel comfortable being “out” in this facility?

All of the survey participants expressed concern about being isolated from their previous lives and whether other residents would gossip or whisper about them.

Current LTC resident and LGBT Elder Initiative board member Ada Bello advises that individuals considering long-term care do “as much research as possible.” Bello suggests three important areas of research:

1. Know your rights. There are many legal protections for residents of LTC facilities. Federal legislation, including the Nursing Home Reform Act and the Fair Housing Act, guarantee certain resident rights and freedom from abuse and mistreatment in such facilities. Additionally, all long-term care residents in nursing facilities across the nation have access to a long-term care ombudsman. The ombudsman will advocate on behalf of long-term care consumers and help them to resolve problems. To locate an ombudsman for yourself or a friend, you can call the Center for Advocacy for the Rights and Interests of the Elderly at 800-356-3606 or visit But fears cannot be legislated away, and laws addressing discrimination don’t guarantee a welcoming environment.

2. Know your options. Visit for helpful tips in planning for long-term care. Also, the LGBT Elder Initiative provides an LGBT Senior Resource Guide for Housing at The Resource Guide identifies housing options in the Philadelphia area. Finally, the Pennsylvania Department of Health website contains reports from all long-term care facilities, including resident surveys and a list of services provided. To access this service, visit, click “Facilities, Providers and Managed-Care Plans” and then find “Nursing Care Facilities.”

3. Learn from others. An LGBTEI Conversation, “Staying OUT in Long-Term Care,” will be held March 22. LTC consumers, administrators and staff will discuss their experiences in the system. You will also hear about your rights in LTC. For more information about this program, call the Elder Initiative at 267-546-3448 or email [email protected].

Even if you are not an older adult considering a long-term care option, you can still work for inclusive and welcoming environments for members of our communities in LTC. You can be an advocate, especially for those who might be hesitant to speak out against discrimination and abuse. Tell the seniors in your life about the Long-Term Care Ombudsman Program, which investigates and brings complaints. They also work to maintain anonymity and prevent retaliation.

Whether seeking information for yourself or getting the information that you need in order to advocate for others, understanding the long-term care system, your rights and your options better equips the entire LGBT community for successful aging at every age.

Mimi Lewis is an MSW candidate at the University of Pennsylvania’s School of Social Policy and Practice and a Hartford Fellow in Aging. She is also a volunteer with the LGBT Elder Initiative. The LGBTEI fosters and advocates for services, resources and institutions that are competent, culturally sensitive, inclusive and responsive to the needs of LGBT elders in the Delaware Valley and beyond. To comment on this article, suggest topics for future articles or for more information, visit or call the LGBTEI at 267-546-3448 and watch for “Gettin’ On” each month in PGN.