Because June is LGBT Pride Month, I wanted to talk about an issue that rarely gets the attention it deserves. It certainly has not been raised in the midst of the discussion following the Supreme Court’s decision over a baker’s right not to bake a wedding cake for two men.
The fact is, when advanced illness strikes, elders who are gay, lesbian, bisexual, transgender or gender non-conforming face more challenges than their heterosexual peers. They are likely to have more complex health conditions than their heterosexual peers, made worse by postponing or not seeking care. Social isolation is a major issue as LGBT seniors are three to four times less likely to have children, twice as likely to live alone and twice as likely to be single. And they may be in poorer financial straits. Going back into the closet out of fear of neglect, disapproval or abuse, is not uncommon.
Their fears are not unfounded. In Spring 2011, six organizations who advocate for elders and for the LGBT population published a study: “LGBT Older Adults in Long-Term Care Facilities: Stories from the Field.” Among the highlights: Only 22 percent said they could feel open about their sexual orientation with staff at a nursing home, assisted living or other long-term care facility. Of those who lived in long-term facilities, or cared for those who did, the most frequently reported problem was negative treatment from other residents, followed by verbal or physical harassment by staff. Moreover, 51 percent reported staff refusing to provide basic care (such as toileting, bathing or feeding.
Some respondents shared a litany of sorrows and stories of lives derailed, couples separated by family members who had legal authority over the facility resident; feelings of loneliness and isolation because of disapproval by other residents or staff; having aides attempting to get people to “repent” for their sins; choosing to go back into the closet for fear of neglect or harm.
For those living with HIV, there are associated issues to worry about, including cardiovascular disease; cancer (non-AIDS); liver, kidney and neurological diseases; osteoporosis; and frailty. Up to 30 percent of people living with HIV have abnormal kidney function, which, untreated, can be fatal.
And if contending with serious illness is a challenge for gay and lesbian people and those living with HIV, it presents even more hurdles for transgender individuals. Owing to a combination of mistrust in the health care system and experience of rejection, discrimination or simple lack of medical knowledge by health care professionals, transgender individuals are at a higher risk for long-term diseases.
But in the midst of this sorry state of affairs, many people and organizations are working to make LGBT elders’ lives better: to make them feel more welcome in senior housing and long term care settings; to train direct health care workers to treat them more equitably; and to address their needs with expertise, kindness and compassion.
One example is Garden State Equality (GSE), a large LGBT organization in New Jersey, where Bianca Mayes, Health and Wellness Coordinator, heads the organization’s Pledge & Protect program. The program is designed to educate all health care providers, including nurse practitioners, doctors, therapists, dentists and other direct service providers, as well as staff in long-term care developments. It also urges service providers, organizations and long-term care facility owners to pledge their commitment to advancing equitable treatment.
Three levels of training are offered, and training covers four general elements: an exploration of gender identity terminology; an overview of historic and current discriminatory practices; general health care disparities and needs (lack of insurance, transportation, poverty, homelessness, lack of legal protection, lack of cultural competence); and recommendations, including ways to design intake forms to be inclusive.
Why focus on intake forms? They are a person’s introduction to a care setting and they can either make that person feel welcome, or alienate and intimidate him or her. Garden State Equality has designed a template for an inclusive intake form, which it shares with trainees. (You can contact firstname.lastname@example.org for a copy.) That has been particularly well-received because, as Mayes pointed out, the intake form “is their Bible.”
Mayes told me that “People want to do the right thing; they just don’t know how.” For example, most people – LGBT or heterosexual — aren’t asked about their sexuality, orientation, history or gender identity. She stressed that “if you apply these practices to everyone, it’s not uncomfortable anymore.”
Mayes started implementing the program in November 2017. It has reached more than 125 health care professionals. GSE has also sent out information to seven sites in two counties in New Jersey. This coming weekend, Garden State Equality and the Green Hill senior living development, will hold a one-day LGBT Senior Housing and Care Expo that will include speakers, panels, vendors and a networking lunch. It will be free to the public. This summer GSE plans to host 10 focus groups serving all 21 counties to help produce a statewide needs assessment.
GSE estimates that there are some 100,000 LGBT men and women over 55 living in New Jersey. Mayes’ biggest hope is that more health care providers will reaching out to the LGBT community.
“They’re not necessarily going to come to you and their needs are dire,” she said.