LGBTQ Caregiving:Issues of Services and Support

Korijna Valenti, M.A., M.S. M.P.W.

Dr. Anne Katz

Today’s

presentation Statistics & Trends Facts about LGBTQ Caregivers Adjusting for Non-LGBTQ Outsiders Employment Study Population Main Themes & Issues Healthcare Services Fears Needs Familial Issues Sensitivity Training Mrs. M. Questions and answers 

We are only as good as

our most underserved population, and that is the LGBTQ population.

Dr. Jamie Huysman

· 65.7 million caregivers make up 29% of the

U.S. adult population providing care to someone who is ill, disabled or aged

· By 2020, caregivers will number 80 million· LGBTQ adults are slightly more likely to

have provided care to an adult friend or relative in the past six months: 21% vs. 17%

· LGBTQ caregivers are often “lost in the shuffle” in terms of their needs being understood and/or met

Caregiver Statistics

Generally relatives of the caregiver 50% live in their own home or apartment.

58% are housebound Average age is 77 Care receivers suffer from chronic illness

Caregiver Statistics

· Difficult to determine number of LGBTQ in U.S.· 3.5 million, approximately; other sources say 2-7 million

· More difficult to determine number of LGBTQ older adults

· LGBTQ older adults are more likely to face economic, health, social difficulties

· Many supports in place for aging in America do not cater to the special needs of LGBTQ seniors

· Positive feelings towards LGBTQ population have risen slowly since the mid-80’s.

· Most people find that lesbians and gay men are the most discriminated group (behind Muslims)

LGBTQ Population Statistics

Marriage Equality

Trends

Don’t have a life Don’t “count” as a couple, for those with partners/wife

De-dyking”: removal of LGBTQ items (photographs, books, etc.) that show the relationship

Recognized by healthcare professional and judged

Need to schedule appointments ahead of time to remove

Adjusting for non-LGBTQ Family and Outsiders

LGBTQ Caregivers: The

Forgotten Faces

· FMLA does not require employers to provide an employee leave to care for a same-sex partner

· June 2013, lawfully-married same-sex spouses now recognized for FMLA purposes

· Employers can develop their own more comprehensive and inclusive leave policies

· Family and Medical Leave Inclusion Act

· Higher level of stress because of secrecy

Employment and the LGBTQ Caregiver

Be friendly and welcoming

Show the employee that offices are LGBTQ friendly (pink triangle, LGBTQ flag, equal sign)

Having more LGBTQ individuals in the office, disclosure is often easier for employees

Employment, Cont’d

Study Population

• Population of 76 older adult LGBTQ women• 93% open about orientation• 49 subjects caring for partner, friend, or family

member• 35-91 years old• 17 states and Puerto Rico• Lesbian 72%, Gay 13%, Bisexual 7%, Queer 7%,

Transgender 1%• Partnered 37%, Single 32%, Married 16%, Polyamorous

9%, Divorced 3%, Widowed 3%• Undergrad 35%, Master’s 28%, Doctorate 13%, Some

College 12%, Professional 5%, Associate’s 3%, High School 3%, Other 1%

• Income: >70K, 33%; <22K, 21.1%; 51-60K, 11%; 23-30K, 9%; 31-40K, 9%; 61-70K, 8%, 41-50K, 7%

• Caucasian 59%, Latina 18%, African American or Black 13%, Native American 3%

The need for health care workers who were both

supportive and knowledgeable about LGBTQ issues; Better and consistent recognition of same-sex

partners and their rights to make decisions as primary caregivers;

Increased sensitivity training regarding the needs of LGBTQ patients and caregivers;

More open and accepting environments where LGBTQ patients and caregivers could feel comfortable discussing issues with the staff

Four Main Themes

Main Issues L Lack of understanding overall G B Better and consistent recognition of same-sex

partners T Thought of as “less than” or unimportant Q Quality of health care services S Socioeconomic levels affect care U Untrained service providers P Problems locating services for LGBTQ P Providers not using inclusive language O Open and sensitive environments R Rights of partners in decision-making T Treatment by service providers

I did not feel I could talk openly with hospital and hospice personnel or be as loving with my partner as I wanted to be.

Had to confront the discomfort with homosexuality and possible homophobia of a CNA.

Discrimination from health care providers, Refusal from hospitals for us to visit during health emergencies

I don't know if they all discriminate, but the ones that do have a terrible effect on the patient and her partner/family

Roadblocks in Healthcare Settings

Fears of the LGBTQ

Caregiver “I will die first. She will not be able to get my social security. She will lose her Medicaid”

“We worry that our marriage will not be recognized at a Federal level in time for her to be able to collect my social security when I die”

I fear I may be limited in access to my partner when level of required care exceeds what I can provide, and with the dying process”

“Separation because of lack of support”

“That she will die and I can't be there with her” “That she would die and her mother/brother would come

and fight me for what we have, her end of life decisions etc. Even with all of the legal paperwork in place I really worried about that”

That I couldn't make decisions for her. That I would be the last person to know she had died.

“That I would not be able to be with her when she died. That I would not be able to have say in her care”

“Loss of insurance coverage and lack of relationship recognition at the federal level”

“That while I wasn't watching someone would let her die”

Fears, Cont’d

“Being low income, female, openly lesbian

are all strikes against me which

makes it difficult to find supportive

services.”

“Legal recognition of our marriage” “Being able to legally handle all aspects of end-of-life planning without difficulty or interference”

“My helping make the right decisions about care; maintaining her dignity”

“The laws to change regarding same-sex marriage on a Federal level”

“Access to information” “Written legal protection” “Full legal rights same as married, same rights as married with Social Security and Medicare”

Needs of the LGBTQ Caregiver: Financial and

Legal

“More understanding by doctors and staff. More

rules to follow so they can't keep people apart” “More services just for GLBT families. Doctors

that treat all patients with dignity regardless of sexual orientation”

“A part-time caregiver to care for mother when I need or want to leave home”

“A support group would be great” “My own organizational/paperwork abilities” “More caregiving support. Less sabotaging from

my care recipients” “Making the situation as comfortable as possible

for all involved . . . and education”

Needs: Healthcare and Support

“I need her parents to stop questioning me on the care being provided & decision regarding finances. They live across country. They will soon be coming to "help", but they are both physically unable to do what is necessary. I will then have them in the same house questioning me.”

“More support and understanding from my family. People were homophobic about all my same sex friends”

I want to be recognized as her primary family and not her brother who has only limited involvement and whose religious beliefs could interfere with ours”

Familial Issues

“17 years ago, when I was doing the bulk of

the caregiving, I was new to the relationship, and Massachusetts did not yet allow same sex marriage. If my partner died (she did not!), I stood to loose the kids, and much of the joint assets. That has all since changed. YEAH, MASSACHUSETTS!”

“Remember that we do have legal protections here, unlike Alabama, that we have great lawyers and family here to support us, and the knowledge that I know more about the system.”

The Signs of Change

Mrs. M

91 year old lesbian caring for partner Had a “Boston Marriage” Rural setting Partner suffered from cancer Spent majority of last year in hospital Nurses were caring but distant; technicians and aides stopped by frequently to “check up” on the couple

Was not able to show emotion or physical closeness “I just wanted to lie with her as she died, but I couldn’t” and “at least rest my head against the same pillow”

Nurse indicated after partner’s death that she would have “been fine” with the show of emotion

Regrets not being able to “properly” say goodbye

• Reform• Training• Heterosexism • Forms

Healthcare & Support Services

Training at all levels Make it easier for LGBTQ people to find supportive and competent providers

Educate physicians and social service workers about specific needs of the community

Community needs to be more involved in educating healthcare providers

Outside metro areas

Supportive and Knowledgeable Health Care Workers

Sensitivity Training

Toolkit for Practioners/Researchers

Aging Awareness Programs Learn to Better Relate Know about Community Services Know what “Respect” means to LGBTQ

Learn how to engage in open acceptance

Conclusions

More awareness is needed. LGBTQ caregiving issues are not being

addressed at the ground level. Until federal policies are in place, it is

up to the service providers to train and maintain staff.

LGBTQ caregivers and patients should not have to “do the work” to make the environment comfortable for staff.

Open and accepting environments should be the “default setting.”