An open letter about the PA State Plan on Alzheimers

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On Aug. 15, on behalf of the LGBT Elder Initiative, I gave the following testimony to Gov. Tom Corbett, Secretary of Aging Brian Duke and the Pennsylvania Alzheimer’s Disease Planning Committee:

Memory loss, dementia, Alzheimer’s disease and other cognitive disease states are critical issues facing Pennsylvanians. Alzheimer’s and related cognitive issues present a looming public-health crisis for all Americans. Within this crisis, members of the lesbian, gay, bisexual and transgender communities face unique challenges as they age.

Alzheimer’s and other cognitive impairments are nothing less than devastating for the patient, caregivers and community. These diseases, along with the mental and physical harm they cause the patient, sap the emotional strength, the physical energy and the financial resources of loved ones. As the commonwealth of Pennsylvania recognized by highlighting this health crisis in the State Plan on Aging, Alzheimer’s will increasingly drain the financial and health-care resources of our state.

The LGBT Elder Initiative, in collaboration with many individuals and organizations, began this conversation within the LGBT communities in April. We presented an educational forum on the medical, psychosocial and caregiving issues resulting from memory loss, dementia, Alzheimer’s and other cognitive issues. At that conference, the unique circumstances facing LGBT older adults were presented.

The bottom line is that access to care and support for LGBT older adults is severely limited. Not only do we face services, resources and institutions that are not culturally competent but, in some cases, hostile, discriminatory and stigmatizing. The vast majority of LGBT older adults fear nursing homes because of these issues.

We also face challenges in caregiving. The family structure in our community is different than that of the general population. This is the result of generations of stigmatization, criminalization and legal discrimination, which continues in Pennsylvania to this day.

Because we have been barred from legally forming “traditional” family structures, and have not been afforded equal rights in any area of endeavor, we do not have the same support and benefits as do non-LGBT older adults.

Reliance on LGBT “families of choice” as we age becomes problematic. Friends caring for friends are often single-generational and can experience the same infirmities, making them unable to adequately care, or advocate, for each other.

Coping with diminished mental capabilities, or taking care of someone experiencing that loss, is difficult in any circumstance. For LGBT older adults, the impact is more severe. Because of stigma, prejudice and intolerance, many LGBT people do not seek care. Support from biological family members is often not an option. Our plans for guardianship, preparation of advance directives and other legal documents can be ignored or challenged in court. Even when we plan for medical crises, we fear that our plans and wishes may not be carried out.

Additionally, LGBT people are often called upon to be caregivers for their aging parents. Whether caring for parents, partners or friends, the stress can be overwhelming.

We are asking you to take immediate steps to begin the process of assuring that all Pennsylvanians — no matter who they love, no matter their sexual orientation, no matter their gender identity — have equal, safe and welcoming access to culturally competent care and services for Alzheimer’s disease, dementia and other cognitive disease states. We ask that you: • recognize and address the needs of LGBT older adults as a community of greatest economic and social need in the State Plan on Aging; • initiate a program to achieve a culturally competent aging service and care network throughout the commonwealth by 2020; • end legal discrimination based on sexual orientation or gender identity in marriage, employment, housing and public accommodation.

We offer our support in these efforts, and we seek your support for these goals.

Fellow community members and allies, please help the LGBTEI advocate for LGBT-friendly Alzheimer’s care and services by contacting the governor, the secretary and the committee. Urge them to adopt the recommendations listed above. Contact Gov. Corbett at 717-787-2500 or [email protected]; secretary Duke at 717-783-1550 or [email protected]; and the Alzheimer’s State Planning Committee at 717-425-5115 or [email protected].

Heshie Zinman is chair of the LGBT Elder Initiative. The LGBTEI, headquartered in Philadelphia, 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 column, suggest topics or for more information, visit www.lgbtei.org or call LGBTEI at 267-546-3448, and watch for “Gettin’ On” each month in PGN.