TESTIMONIES

STATE PLAN ON ALZHEIMER'S PUBLIC HEARING
August 15, 2013
Philadelphia, PA

Testimony presented by 
Heshie Zinman, Chair
LGBT Elder Initiative


Good morning.  My name is Heshie Zinman and I am the chair of the Lesbian, Gay, Bisexual and Transgender Elder Initiative (LGBTEI).  Thank you for giving me this opportunity to discuss with you how memory loss, dementia, Alzheimer’s disease and other cognitive disease states impact the LGBT communities.  Alzheimer’s and related cognitive issues present a looming public health crisis for all Pennsylvanians.   In this crisis, members of the LGBT communities face unique challenges.

Alzheimer’s and other cognitive impairments are nothing less than devastating for the patient, the caregivers and for the community.  These diseases, along with the mental and physical harm that they wreak on the patient, sap the emotional strength, the physical energy and, all too often, 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 healthcare resources of our state.

We appreciate the opportunity that Governor Corbett, Secretary Duke and the Committee have provided so that we can begin a conversation among representatives of the commonwealth and the members of the healthcare, aging and LGBT communities.

The Elder Initiative is dedicated to promoting an optimal quality of life for LGBT older adults who experience Alzheimer’s Disease.  To this end, we seek to inform policy that will support culturally sensitive approaches that maximize the independence and dignity of members of our communities.  This effort will require a collaborative dialogue to ensure equity for LGBT older adults with respect to the design of legal, social and health care support. 

The LGBTEI began this conversation within the LGBT communities in the Delaware Valley in April of this year.  Along with  other community organizations, 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 forum, the unique circumstances facing LGBT older adults were presented.  The bottom line is that access to care and to support for LGBT older adults is severely limited.  Not only do we face services, resources and institutions that are not culturally competent and sensitive, but in some cases, hostile, discriminatory and stigmatizing.  The vast majority of LGBT older adults fear nursing homes and other care providers because of these issues.

We also face challenges in caregiving because 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 prevented 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.  According to a survey conducted by the Brookdale Center on Aging in NYC, it is estimated that:

·      up to 75% of LGBT older adults live alone vs. 33% of elders in the general population;

·      90% do not have children vs. 20%; and

·      80% have no partner vs. 40%. 

These statistics explain why many LGBT older adults do not have the social, emotional, financial, and medical support structures that older adults in the general population enjoy.  Reliance on LGBT “families of choice” as we age becomes problematic.  Friends who are caring for friends are, for the most part, single generational.  Members of these “logical” families are often experiencing the same infirmities and are thus 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, Medical Powers of Attorney 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.

Ladies and gentlemen, we are asking that you 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.

Study after study shows that culturally competent care equals effective care which equals increased quality which equals decreased cost.   Unless patients feel safe enough to disclose their sexuality to a provider, they will not seek care and they will miss the opportunity for early detection and treatment.  Without trust, the shared decision-making model cannot work.  We know that these factors lead to poor outcomes, increased costs and unequal treatment for the community of LGBT older adults in Pennsylvania.

We ask that you:

·      recognize and address the needs of LGBT older adults as a community of greatest economic and social need by amending the State Plan on Aging;

·      initiate a program to achieve an LGBT-culturally competent aging service and care network throughout the Commonwealth by 2020;

·      end legal discrimination in employment, housing and public accommodation; and

·      advocate for the end of legal discrimination against same-sex partners, by giving them all of the rights, responsibilities and benefits of marriage.

Governor Corbett, Secretary Duke and members of the Committee, we are here to offer our support in these efforts.  We seek your support for these goals.  We support your effort in assuring that ALL Pennsylvanians have access to the care and support that they need in order to deal with the public health crisis that we face in Alzheimer’s, dementia and other cognitive disease states.

Thank you.




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