When New Yorkers go home from the hospital, the health care system suddenly becomes very personal.
There may be complicated medication regimens to follow, injections to administer, bandages to replace, complex medical equipment to operate, and much more. In many instances, those tasks are up to the person whom patients trust most with their well-being — their caregiver.
The transition from hospital to home is a critical time for patients — especially for many in the LGBT community who may have fragile family support systems. And the potential burden on their caregivers can’t be underestimated.
Strengthening All Families
Caring for a loved one — without pay or pomp — is a big job. The consequences of mistakes loom large. Yet more than four million New Yorkers do it every year — for older parents, spouses, partners, friends, and loved ones.
It stands to reason that if we want our loved ones well cared for at home, their caregivers must be given the proper instruction in how to provide that care.
That is why, with help from AARP, we’re working to make sure our state laws recognize the critical role caregivers play in our health system.
The CARE Act (Caregiver Advise, Record, and Enable) would allow hospital patients to designate a family caregiver and require hospitals to offer that caregiver instruction in and a demonstration of the tasks that they will be expected to perform at home post-discharge.
This bill reflects our understanding that the LBGT community (and the same holds true for many other communities) will receive the care they need if medical providers recognize the circles of family and friendship that lesbian, gay, bisexual, and transgender New Yorkers have built.
That’s why the CARE Act (A.1323) would allow patients to designate whomever they choose as a caregiver — and why it requires hospitals to provide those caregivers the knowledge they need to follow the discharge plan and to be able to provide proper care at home and to access support services.
The fact is, LGBT people often face severe isolation as they age, since they are four times less likely to have children than other elders, twice as likely to be single and living alone, and much more likely to be disconnected from their families of origin.
The caregivers of LGBT elders are often isolated as well, since many are not part of a larger family network. This fragility of care and support for LGBT elders makes it especially important that medical providers recognize and support the caregiving relationships that exist for LGBT older people – their “families of choice.”
The CARE Act would be an important step forward by providing hospitals with an inclusive framework that recognizes the wishes and preferences of all kinds of families and caregivers, and that helps identify patients who are profoundly isolated.
We know from experience that LGBT caregivers often have limited access to LGBT-affirming services in their communities. The CARE Act addresses this issue as well, requiring that hospitals offer the caregiver and patient answers to their questions in a culturally competent manner and provide contact information for health care, community resources, and long-term services and supports necessary to successfully carry out the patient’s discharge plan.
The State Senate last month passed the CARE Act unanimously and the Assembly Health Committee quickly followed suit. But the bill still must clear the Assembly’s Codes Committee and the full house before going to Governor Andrew Cuomo to sign into law.
The governor proposed a similar “Caregiver Support Initiative” in his 2015 State of the State/Opportunity Agenda, so we are optimistic that he will sign the CARE Act once it reaches his desk.
This bill is critically important, and we will do all in our power to ensure that it passes into law this year. Let’s pledge to join together and give all caregivers the support they deserve.
Linda B. Rosenthal is the prime sponsor of the CARE Act in the New York State Assembly, where she represents the 67th District on the Upper West Side of Manhattan. Michael Adams is the executive director of Services and Advocacy for GLBT Elders (SAGE).
