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AARP Offers Testimony in Support of Caregiving Act and Personal Care Allowance for Long Term Care Residents

TESTIMONY OF AARP REGARDING SENATE BILL NO. 89: AN ACT ALLOWING SPOUSES TO SERVE AS CAREGIVERS

AND SENATE BILL NO. 133: AN ACT INCREASING THE PERSONAL CARE ALLOWANCE FOR LONG TERM CARE RESIDENTS

BEFORE THE JOINT COMMITTEE ON CHILDREN, FAMILIES AND PERSONS WITH DISABILITIES IN BOSTON, MA

JANUARY 4, 2022

"Good afternoon.  I am Mike Festa, state director of AARP Massachusetts.  AARP is a nonprofit, non-partisan membership organization for people 50 and over with nearly 38 million members nationwide.  We have approximately 775,000 members here in the Commonwealth.  Thank you for the opportunity to address you on behalf of our members.  We are here today to urge favorable passage of Senate Bill No. 89, An Act Allowing Spouses to Serve as Caregivers and Senate Bill No. 133, An Act Increasing the Personal Care Allowance for Long Term Care Residents.

CAREGIVING AND SPOUSES AS CAREGIVERS – SENATE BILL NO. 89

As you know, the current system for providing and funding long term services and supports (LTSS) is largely uncoordinated, fragmented, and costly. The majority of services are provided by unpaid family caregivers.

We know families and friends need access to assistance so they are not unreasonably burdened and can continue to provide care. Caregiver assistance should include education and training, counseling, legal consultations, respite care, adult day services, programs that help individuals pay relatives and friends who provide care, and other types of help.

America’s population is aging and becoming more diverse. The age 65+ population is projected to almost double from 48 million in 2015 to 88 million in 2050. Supporting our nation’s family caregivers and ensuring a sufficient, competent, and stable workforce to care for older adults and people with disabilities will continue to have growing importance as our nation’s population ages.

Family caregivers face daily challenges, need recognition and deserve support.

As the country continues to age, the need to support caregivers as the cornerstone of society will only become more and more important. Today, more than 1 in 5 Americans are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53 million adults in the United States, up from the estimated 43.5 million caregivers only five years ago in 2015.

More than 844,000 Bay State residents are caring for aging parents or loved ones, helping them live independently in their own homes and communities, which is where most want to live. The total value of unpaid care provided to individuals in need of long-term services in Massachusetts amounts to more than $11 billion every year and is $470 billion nationwide.

Let me start by sharing some important data that is critical to understanding the current situation:

  • Last year alone, nearly 39 million adults provided unpaid care to an adult family member or friend with health or functional needs.
  • Caregivers provide help with a wide range of activities of daily living (such as bathing and dressing) and instrumental activities of daily living (such as paying bills, doing housework and laundry, and managing medications). 
  • Family caregivers sometimes provide complex health care, including medical and nursing tasks such as tube feedings and dressing wounds.
  • Caregivers often coordinate health care and facilitate access to services and supports.
  • The average duration of care is 4.5 years, but 29 percent of caregivers have provided care for five or more years.
  • 61 percent of family caregivers are women.
  • The average age of caregivers is 49.
  • They provide, on average, nearly 24 hours of care each week, mostly to older people.
  • About 54 percent of caregivers who provide care to a relative or friend are age 50 and older.
  • About one in four family caregivers of adults are part of the millennial generation.
  • Almost three in four are employed in jobs outside the home.
  • A slightly higher percentage of African American and Hispanic populations are caregivers compared to white, non-Hispanic Americans.
  • Both African American and Hispanic caregivers are more likely to be higher-hour caregivers than other populations.
  • Family caregivers can incur high out-of-pocket costs for care.
  • More than three out of four caregivers had out-of-pocket costs related to caregiving, spending, on average, $7,000 per year in 2016.
  • Long-distance caregivers (defined as family caregivers living more than one hour from the care recipient) incurred the highest out-of-pocket costs ($11,923).
  • On average, caregivers are spending nearly 20 percent of their income on caregiving activities.

PERSONAL CARE ALLOWANCE - SENATE BILL NO. 133

AARP believes this should be codified and not continue to be part of the annual budget process.

As you are aware, Medicaid is the largest public financing program providing health and long-term care coverage for people with low incomes in the United States.  It is the most important source of health care coverage for low-income individuals of all ages, including one in every four children.  The program also helps finance care for more than two-thirds of all nursing home residents and it is critical.

Medicaid-eligible nursing home residents are permitted to keep a personal needs allowance to cover basic expenses such as personal hygiene supplies and mobile phones. AARP believes long term services and supports should emphasize the independence, dignity, autonomy, and privacy of individual consumers so they can maximize their physical and psychosocial potential, and the personal needs allowance helps to do so.  At both the state and federal level, we support adjustments annually to account for changes in the cost of personal needs.

AARP strongly urges the Joint Committee on Children, Families and Persons with Disabilities to favorably report out both bills.  Thank you." 

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