Advocates & Lawmakers Say it’s Time to Pass CARE Act, help Millions of NY’s Family Caregivers

Legislation Would Offer Instruction in Post-Discharge Tasks 

ALBANY, N.Y. – Bill sponsors, advocates, and family caregivers called for the final passage of the CARE Act to support family caregivers without delay before the end of the legislative session.

“Time is running out for this bill to successfully land on the governor’s desk this session,” said Beth Finkel, State Director for AARP in New York. “The quicker legislators can get this measure passed, the quicker millions of caregivers will be better informed to help their loved ones when they are released from the hospital. The CARE Act will give caregivers the tools they need to prevent a quick return to the hospital.”

The Caregiver Advise, Record and Enable Act ensures hospital patients can designate a family caregiver and requires hospitals to offer that caregiver instruction and demonstrations of tasks they will be expected to provide for their loved ones at home, such as managing multiple medications and dressing wounds.

“Now is the time for this bill to be moved to the Assembly floor and be approved, which will be a victory for over four-million family caregivers and all New Yorkers,” Finkel said.

The CARE Act (S.676-A Hannon/A. 1323-A Rosenthal) is AARP’s top 2015 state legislative priority and supports family caregivers as they help New Yorkers safely age at home. Representatives from some of the more than 50 organizations that help older New Yorkers and their loved ones stood with AARP today. They included: the Coalition of NYS Alzheimer’s Association Chapters, Service and Advocacy for GLBT Elders (SAGE) and New York Public Interest Research Group (NYPIRG). Caregivers were also on hand, emphasizing how this law would help them.

“There are so many new things caregivers are required to learn and do,” said Linda Waddington, a caregiver from Rotterdam, whose husband has Alzheimer’s. “All of these new skills require some instruction. Caregivers are also dealing with so many other responsibilities – paying bills, keeping up a home, perhaps working. We need your total support in passing the Care Act.”

“Family caregivers, especially those who are new at it, don’t even know to ask questions about how to provide proper care at first,” said Jerome Brown of Bedford-Stuyvesant, who has been caring for his wife, Linda, for 20 years. “They’re overwhelmed. It shouldn’t be on them, especially at a vulnerable and scary time like hospital discharge. The CARE Act would ensure it isn’t on them.”

The Assembly Health Committee passed the measure late last month, moving it to the Codes committee. The Senate had earlier passed the bill unanimously.

With the Senate already having passed the legislation, and Governor Andrew Cuomo having proposed a similar Caregiver Support Initiative in his 2015 State of Opportunity Agenda (pages 305-306), AARP is optimistic this important measure will become a reality this year and begin providing New York’s family caregivers the tools they need to properly care for their loved ones.

Last month the State Senate unanimously passed the measure, which was championed by Senate Health Committee Chair Kemp Hannon (R-Nassau).

“The CARE Act is a win-win,” explained Hannon. “It helps patients, their caregivers and health care providers by improving patients’ health and reducing unnecessary hospital readmissions and ER visits.”

CARE Act advocates also commend the bill’s sponsor and champion in the Assembly, Linda Rosenthal (D/WF-Manhattan).

"A loved one's return home from the hospital is usually met with joy and relief. Mixed with that joy, however, may be some level of apprehension because the caregiver will now be responsible for administering medication, operating medical equipment, caring for wounds and performing other tasks to ensure their loved ones' continued health," said the Assemblymember. "My bill, A.1323, the CARE Act, will ensure that caregivers have the support that they need to take care of their loved ones at home with confidence and skill. I urge my colleagues in the Assembly to pass this important piece of legislation this session."

View additional quotes in support of the Care Act.

The bill could help 1.6 million adult New Yorkers a year who are discharged home from hospitals, as well as many of the state’s more than four million family caregivers.

The ranks of New York’s caregivers are only expected to increase as New York’s population ages - yet AARP found that in the coming years, fewer family members will be available to provide care for more older loved ones who will need it. In 2010 there was a potential pool of 6.6 people aged 45-65 for every person 80 and older who would likely need care at some point. That number will shrink to 4.8 by 2030 and 3.5 by 2050.

About half of all family caregivers perform medical and nursing tasks for their loved ones. AARP estimates New York’s family caregivers provide care valued at an estimated $32 billion a year.

The CARE Act would help more New Yorkers age in their own homes, rather than in costly, taxpayer-funded nursing homes or other institutional settings. The bill, which could reduce costly hospital readmissions, requires that patients’ designated family caregivers be identified and included in official medical records and that hospitals notify family caregivers prior to a patient’s transfer or discharge.

The bill enjoys broad support among voters 50 and older across New York, with 92% saying hospitals should “explain and demonstrate” to family caregivers medical tasks they’ll have to perform when their loved ones are sent home from the hospital, a 2014 AARP survey found.

More than 50 organizations that serve older New Yorkers across the state support the CARE Act. 

“The Coalition of New York State Alzheimer’s Association Chapters strongly supports the CARE Act; it’s focus on including and educating the caregiver is at the core of the Alzheimer’s Association mission and we are proud to join AARP to advocate on behalf of all New Yorkers receiving in-home, unpaid family care,” said Jane B. Ginsburg, the Director of Statewide Initiatives, Coalition of NYS Alzheimer's Association Chapters.

“Because LGBT older adults who need care often have very fragile support systems, which makes it especially important that medical providers aren’t tied to rigid definitions of family and recognize the circles of family and friendship that we build,” said Michael Adams, Executive Director of Services & Advocacy of GLBT Elders. “The CARE Act would be an important step toward recognizing and supporting all caregiving relationships, which is why SAGE is proud to stand with AARP New York and our other partners in supporting this legislation,” Adams added.

“The Care Act is an integral piece in helping to meet our goals of lowering unnecessary visits to the Emergency Department, lowering readmittance to the hospital and/or longer stays in a rehabilitative setting. By giving our caregivers the tools they need, they can help their loved ones and reduce their own caregiver stress,” said Julie Allen Aldrich, the director of the Monroe County Office for the Aging.

“A staggering number of patient injuries and deaths result from medical mistakes. Policies must be enacted to make health care safer. Ensuring that caregivers are adequately trained to handle discharged patients is one important way to improve health care in New York,” said Blair Horner, Legislative Director for New York Public Interest Research Group (NYPIRG).

“I want to thank Assemblymember Rosenthal, Senator Hannon, AARP and all the advocates for leading the effort to help family caregivers in New York State. Family caregivers are the backbone of the health care system. They need support, assistance and information to be effective. The Care Act is a huge step forward in helping these extraordinary individuals so they can care for their loved ones,” said Ann Marie Cook, President and CEO of Lifespan of Greater Rochester Inc.

“As a large provider to almost 1,000 seniors that live at People Inc.’s affordable senior housing locations throughout western New York, often we witness cases when caregivers are not adequately kept in the loop when it comes to the healthcare of their own mothers and fathers. Healthcare technology is advancing rapidly but unfortunately also advancing rapidly is often the mental well-being of our older generation as they live longer. More now than ever, it is critical that caregivers are informed of what medicine, test, or operation mom or dad are going to need so that the caregiver and healthcare provider can jointly do what is in the best interest of their loved one and patient,” said Rhonda Frederick, President and CEO of People Inc.

"The Care Act is one of the most important ways to make medical-care safer and more effective for patients. It's time to get this done," said Bruce A. Boissonnault, CEO, Niagara Health Quality Coalition.

"As hospital stays become shorter, ensuring a safe transition from hospital to home becomes ever more critical to good patient care.  Family caregivers have a wealth of useful information that must be tapped to make sure this transition is successful.  We appreciate AARP's leadership on such an important issue," said Suzanne Y. Mattei, executive director of New Yorkers for Patient & Family Empowerment, Inc.

"On behalf of NY ALFA, I'd like to thank Senator Hannon and Assemblywoman Rosenthal for their leadership and efforts to pass The Care Act. As New York's population continues to age, growing numbers of seniors are reliant on caregivers, both formal and informal, to assist them with health care needs, particularly after discharge from a hospital. The Care Act will help advance NY ALFA's mission to uphold and secure the independence, dignity, and quality of life for New York's seniors." Ginger Lynch Landy, Co-Director, NY Assisted Living Federation of America.

"Latinos frequently serve as caregivers within their families, helping to navigate health and legal systems. The CARE Act bridges a longstanding gap in healthcare coordination and will help our community continue to provide the best care possible for our families," said Jose Calderon, President of Hispanic Federation.

Contacts: Donna Liquori, 518-852-9150, dliquori@gmail.com; Chaunda Ball, 917 859-0029, cball@aarp.org

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