LGBT Caregivers: What Does the Future Hold?

By Family Caregiver Alliance

Earlier this week, President Obama became the first president of the United States to endorse gay marriage. While the immediate effects of his endorsement aren’t clear, there is a possibility that this endorsement may carry over to changing policies that affect LGBT caregivers in long-term care programs like Medicaid. This post highlights unique challenges faced by LGBT caregivers and seniors, recent policy developments, and recent research on LGBT aging and caregiving.

Medicaid is the largest payer of long-term care in the U.S. (outside of uncompensated care provided by family caregivers), however, Medicaid spousal impoverishment rules that are intended to preserve some assets for the “community spouse” treat same-sex couples differently when one of the persons needs long-term care.  A 2010 report (LGBT Older Adults and Long-Term Care Under Medicaid Services) explains the difference:

For a heterosexual spouse to qualify for either institutional care or HCBS, Medicaid typically pools the couple’s assets and allows the healthy spouse to keep the greater of 100% of the assets up to $21,912, or 50% of the assets up to a maximum of $109,560. In contrast, an LGBT elder must always apply as a single person and is therefore only entitled to keep a mere $2,000 in countable assets. The same-sex healthy partner (a legal stranger under the law) can keep any and all assets in his or her own name, but is not entitled to any assets or property held by the partner receiving long-term care.

Daniel Redman, an attorney in the Elder Law Project of the National Center for Lesbian Rights (NCLR), explained the difference in how LGBT caregivers are treated under Medicaid spousal impoverishment laws in his article in the July/August 2011 issue of Aging Today (Improving LGBT lives, One Law At A Time)

Take Ray and George, two clients of Services & Advocacy for GLBT Elders (SAGE), profiled in the SAGE report Improving the Lives of LGBT Older Adults. Ray has Alzheimer’s disease, and George worries about when Ray might need a nursing home.

Without Medicaid’s spousal impoverishment protections, Ray would have to spend down virtually all of his assets to qualify for Medicaid-covered long-term care, leaving nothing for George, whose income is much smaller. That the government doesn’t recognize their relationship adds stress to George’s already significant caregiving burden, and he wonders how he’ll pay rent for the home they’ve shared for 44 years.

Redman notes that in 2008, Massachusetts granted same-sex couples equivalent protections by using state money to pay for care.  In addition to spousal impoverishment, depending on the state, there may also be differences in how assets in same-sex couples are treated in regards to Medicaid liens, asset transfers, and estate recovery.

Federal Guidance on Same-Sex Couples and Assets
In June 2011, CMS informed State Medicaid Directors about options and flexibility for states that are especially applicable to same-sex partners, including:

  • Medicaid liens: “A State can have a policy or rule not to pursue liens when the same-sex spouse or domestic partner of the Medicaid beneficiary continues to lawfully reside in the home.”
  • Transfer of assets: “Because of the flexibility afforded to States in determining undue hardship, we believe that States may adopt criteria, or even presumptions, that imposing transfer of assets penalties on the basis of the transfer of ownership interests in a shared home to a same-sex spouse or domestic partner would constitute an undue hardship.”
  • Estate Recovery: “In addition, States are required by section 1917(b)(3) of the Act to have procedures to waive estate recovery where it would create an undue hardship for the deceased Medicaid recipient’s heirs. States have flexibility to design reasonable criteria for determining what constitutes an undue hardship and who may be afforded protection from estate recovery in such instances. At the State’s discretion, this may include establishing reasonable protections applicable to the same-sex spouse or domestic partner of a deceased Medicaid recipient.”

Under the Affordable Care Act, beginning in January 2014, Medicaid spousal impoverishment protections that currently exist when one spouse is going into a nursing home will also be extended for when a spouse remains in the home (where most people would prefer) and receives Medicaid Home and Community-Based services. It is unclear how or if this protection that enables people to “age in place” will also be widely available to LGBT seniors and their caregivers.

Hospital Visitation Rights
In September 2011, HHS announced new guidance to hospitals that participate in Medicaid and Medicare outlining the rights of hospital visitors to choose their own visitors during a hospital stay, including a visitor who is a same-sex partner. The guidance also outlines that patients have the right to designate the person they want (including same sex partners) to make medical decisions on their behalf if they are incapacitated.

Housing Discrimination
In March 2012, a rule written by the U.S. Department of Housing and Urban Development (HUD) took effect that prohibits housing discrimination in all HUD subsidized, insured and financing programs against LGBT individuals. LeadingAge has more information on how this new rule affects owners/operators of HUD-assisted or HUD-insured housing.

Research in the past several years has looked at the unique challenges faced by LGBT caregivers and their loved ones and how they have responded.

The Caring and Aging with Pride Project,  based at the University of Washington School of Social Work, released an in-depth report in 2011: “The Aging and Health Report Disparities and Resilience among Lesbian, Gay, Bisexual, and Transgender Older Adults.”  The authors of the report used both quantitative data from the BRFSS survey in Washington State as well as interviews with LGBT older adults from across the nation. In the section focused on LGBT caregivers, the authors note that “…among LGBT older adults, friends play a much greater role in caregiving.” They also note that in contrast to the general population of caregivers, both men (26%) and women (30%) had high rates of caregiving.

In a guest blog post during FCA’s 30 Days of Caregiving, “Caregiving in the LGBT Community,” Scott French, the SAGECAP Program Manager, noted that LGBT older adults are twice as likely to age as a single person, twice as likely to live alone, and three to four times less likely to have children to support them. In light of these differences, French notes that LGBT older adults have developed social networks of partners, friends, ex-partners, neighbors and others, and that these networks are often referred to as “families of choice.”

In light of President Obama’s announcement earlier this week, it will be interesting to see how the long-term care infrastructure in the U.S. will also evolve to better support LGBT caregivers and their loved ones.

LGBT family caregivers often face unique challenges, and the resources outlined below are helpful guides in the caregiving journey:

1) FCA: Legal Issues for LGBT Caregivers Fact Sheet

2) FCA: Special Concerns of LGBT Caregivers Fact Sheet

3) National Resource Center on LGBT Aging: Resources for Healthy Aging For LGBT Older Adults (includes state-by-state guide)

4) “NAVIGATING THE SYTEM: A Know-Your-Rights Guide for Lesbian, Gay, Bisexual, and Transgender Elders in California” (Produced by the National Center for Lesbian Rights, Planning for Elders, The Transgender Law Center, Lavender Services of the East Bay/Tides Center, and Openhouse)

5) National Resource Center on LGBT Aging: “Inclusive Services for LGBT Older Adults: A Practical Guide to Creating Welcoming Agencies”

6) “LGBT Older Adults and Long-Term Care Under Medicaid” (Produced by Movement Advancement Project, Services & Advocacy for Gay, Lesbian, Bisexual and Transgender Elders [SAGE], and Center for American Progress)

7) MetLife Mature Market Institute: “Still Out, Still Aging” 

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