Advocacy

young woman with Down's Syndrome and mother

Personal calls and letters make a difference

Let your voice be heard! Tell your elected officials that you believe that caregivers need their support. Find a list of all New York State's elected officials here.

 Help to support Caregivers in New York!

Help to support Caregivers in New York!


Senate Passes Supporting Grandparents Raising Grandchildren Act (S. 1091)

On March 22, 2018, the Senate passed the Supporting Grandparents Raising Grandchildren Act (S. 1091), which would create a federal task force charged with supporting grandparents raising grandchildren. The opioid epidemic has fueled increases in the number of relative caregivers in need of support. The task force is charged with identifying, promoting, coordinating, and publicly disseminating information and resources to help grandparents or other relatives meet the needs of the children in their care and maintain their own health and emotional well-being. The task force terminates after five years. The bill was originally introduced by U.S. Senate Special Committee on Aging Chairman Susan Collins (R-ME) and Ranking Member Bob Casey (D-PA). The U.S. House of Representatives must pass the legislation before it becomes law.  Press Release


President Signs FY 2018 Omnibus Appropriations Bill

On March 23, after tweeting that he would not sign the bill because it did not include provisions protecting Deferred Action for Childhood Arrivals program (DACA) recipients or funding for a border wall, the President signed an omnibus spending measure (Public Law No. 115-141), averting a government shutdown. The bill sets federal spending levels for appropriated government programs for FY 2018, which started last October 1 and will end September 30, 2018.  

The funding bill includes increases for programs administered by the Department of Health and Human Services (HHS) that support caregivers, including a $750,000 increase for the Lifespan Respite Care Program to $4.11 m and a $30 million increase for the National Family Caregiver Support Program (NFCSP), raising the FY 18 amount to $180.6 million. The bill rejects many of the cuts to HHS programs that the House and the Administration previously proposed. Most of the aging and disability programs in the Administration for Community Living saw increases, including ADRCs, which will receive an additional $2 m ($8 m).

In addition, funding for the Social Services Block Grant, targeted for elimination by the Administration, was retained. While Title I of the Child Abuse Prevention and Treatment Act (CAPTA) will receive a $60 m increase, the first increase for this program in decades, Title II of CAPTA, the Community Based Child Abuse Prevention grant program (CBCAP) that funds respite as a core service, was level funded. The Maternal and Child Health Program, which can also fund respite through the Children with Special Health Care Needs program, will receive an additional $10 m.

Congress rejected the Administration's proposal to eliminate funding for the Senior Corps programs (RSVP, Foster Grandparents and Senior Companion) under the Corporation for National and Community Service (CNCS) and level-funded all Senior Corps programs at FY 2017 allocations of $202 million.

In the Department of Veterans Affairs, support for caregivers of Veterans, including the Program of Comprehensive Assistance for Family Caregivers (PCAFC) for post-9/11 Veterans, received a boost to nearly $840 million. This represents a greater than 40 percent increase over the Administration's request and a $100 million increase over the FY 2017 funding level. However, proposed provisions to expand the PCAFC to Veterans from all eras was not included in the omnibus appropriations bill. 

Advocates also had been working to include an extension of the Money Follows the Person (MFP) program in the omnibus bill, but they were not successful. The National Respite Coalition will join others in working to move this effort forward in the coming months.

The bill does include Kevin and Avonte's Law (S. 2070), which provides grants to develop locally based programs to prevent wandering, locate missing individuals, and develop tracking technology programs to locate missing individuals with dementia or children with developmental disabilities.

The Bipartisan Congressional Assisting Caregivers Today (ACT) Caucus

Family caregivers are the backbone of our care system. Today about 40 million unpaid family caregivers in the United States help older parents, spouses, aunts, uncles and other adult loved ones live independently at home — where they want to be. Additionally, about 3.7 million family caregivers provide care to a child under age 18 because of a medical, behavioral or other condition or disability. About 6.5 million family caregivers assist both adults and children. Caregivers help their loved ones while juggling work, raising children and more. Many of them are on call 24/7 and can’t even take a break.

These caregivers have a big job, but some basic support — and commonsense solutions — can help make their big responsibilities a little bit easier. The bicameral, bipartisan Assisting Caregivers Today (ACT) Caucus, launched March 3, 2015,  focuses on bringing greater visibility to family caregivers, the challenges and opportunities that individuals of all ages face as they seek to live independently, and the need for solutions.

These caregivers have a big job, but some basic support — and commonsense solutions — can help make their big responsibilities a little bit easier. The bicameral, bipartisan Assisting Caregivers Today (ACT) Caucus, launched March 3, 2015, focuses on bringing greater visibility to family caregivers, the challenges and opportunities that individuals of all ages face as they seek to live independently, and the need for solutions.


The Credit for Caring Act

The proposed Credit for Caring Act would be a first step in supporting family caregivers who work.

Proposed legislation, called the Credit for Caring Act, would create a federal, nonrefundable tax credit of up to $3,000 for family caregivers who work while also financially helping their parents, spouses, children and adults with disabilities or other loved ones. The bill (S. 1151/H.R. 2505) was introduced by Sens. Joni Ernst (R-Iowa), Michael Bennet (D-Colo.), Shelley Moore Capito (R-W.V.) and Elizabeth Warren (D-Mass.), and Reps. Tom Reed (R-N.Y.) and Linda Sánchez (D-Calif.). AARP has endorsed the Credit for Caring Act, as have other national organizations. AARP is urging the inclusion of this family caregiver tax credit in the final tax reform package.

Family caregivers in America

Family caregivers help their loved ones live independently in their homes and communities, keeping them out of more costly nursing homes and saving taxpayer dollars. Forty million Americans care for adult loved ones. The unpaid care these family caregivers provide is valued at about $470 billion a year, more than total Medicaid spending in 2013. In addition, about 3.7 million family caregivers provide care to a child younger than 18 with a medical, behavioral or other condition or disability, and 6.5 million family caregivers assist both adults and children. Family caregivers help with bathing and dressing, preparing meals, managing medications, driving to appointments, keeping up with finances and more.

Why is a tax credit needed?

Family caregivers take on huge responsibilities that can be overwhelming, stressful and exhausting — not to mention challenging financially. Many juggle family caregiving duties while working full- or part-time jobs; some are still raising families.

Seventy-eight percent of family caregivers use their own money to care for loved ones — paying for transportation, home modifications, medications, assistive technology and more.

  • Those caring for loved ones 18 and older spent an average of nearly 20 percent of their annual income on caregiving expenses — an average of roughly $7,000 in 2016.

In order to help their loved ones, family caregivers often risk their own health and financial security. They tap into their savings accounts, delay or stop saving for their future, and neglect their own health care.

In addition to easing some of the added financial costs of family caregivers, this tax credit could assist in the following ways:

  • Providing relief so that family caregivers can take a hard-earned break
  • Helping family caregivers who work pay for home care or other support so they can continue working while also fulfilling their family caregiving responsibilities

The Credit for Caring Act was developed to help address the financial challenges of family caregiving and to help family caregivers stay in the workforce and be more financially secure. It would give eligible family caregivers the opportunity to receive a tax credit for 30 percent of the qualified expenses above $2,000 paid to help a loved one, up to a maximum credit amount of $3,000. Family caregivers must meet the following criteria:

  • Be a spouse, adult child, parent or another relation named under the “dependent” definition
  • Help a loved one, of any age, who meets certain functional or cognitive limitations or other requirements, as certified by a licensed health care practitioner
  • May or may not live with the loved one
  • Have more than $7,500 in earned income for the taxable year
  • Can document qualified expenses

The bill also includes important provisions to do the following:

  • Index certain dollar amounts and income levels to inflation
  • Coordinate with other existing tax provisions to prevent double-dipping
  • Phase out at higher income levels