WASHINGTON – Maryland’s 517,124 family caregivers put in 554 million hours a year, work worth an estimated $4.8 billion, part of an “invisible workforce” in the nation that needs to speak up for itself, a new report says.
The numbers were presented Tuesday at the first-ever National Town Hall Meeting on Family Caregiving, which said that 27.2 million family caregivers in America work just under 29.2 billion hours per year — an average of 20.6 hours per week. That work has a market value of $257 billion, or more than double the amount spent annually on nursing homes and paid home care combined, the report said.
Congressional leaders and volunteer organizations at Tuesday’s meeting said it is time for the creation of a national movement to enact policy and give a voice to those caregivers.
“We talk about families being a priority in our country, and we need to put our money where our mouth is,” said Suzanne Mintz, co-founder and president of the National Family Caregivers Association, the Kensington-based group that organized the meeting.
Advocates outlined eight proposals that should apply to all caregivers, including: making caregiving a central element of social service policymaking and health care; providing financial, emotional, mental and physical support; making respite care readily available; and offering training and ongoing education for caregivers.
“We cannot continue to take family caregivers for granted,” Mintz said.
Caregivers are family members who find themselves with a loved one who is incapacitated by a congenital defect or has suffered a debilitating, chronic emotional or physical disease, such as autism, stroke or Alzheimer’s disease.
Speakers at the meeting in a packed Senate hearing room emphasized the physical, emotional and mental toll that watching after a loved one takes on the caregiver: One said she learned all the spots where she could pull over and cry on the road between her home and the home of the parents she was caring for.
Caregivers called for funding of an Institute of Medicine report that could act as “blueprint for future planning, policy and interventions” as well as passage of the Lifespan Respite Care Act, a bill before Congress that would provide affordable respite care across the nation.
Respite care — outside help designed to give a family caregiver a break from the sometimes 24-hour-a-day job they find themselves in — was the item most requested by Maryland caregivers in surveys by the Maryland Caregivers Support Coordinating Council in 2001 and 2002.
In Maryland, state dollars are available for respite care, along with money for families caring for children or adults with developmental disabilities, said Dorinda A. Adams of the Office of Adult Services with state Department of Human Resources. Limited respite care is also available for children with emotional diagnoses.
Respite care and other services are also accessible through the National Family Caregivers Support Program, a federal program that aids caregivers of adults 60 and older or children under age 18.
Adams said the idea of a national movement to help what has been primarily thought of as an individual problem is the right one.
“It can’t be just a government issue. It has to be from the faith-based communities, it has to be state agencies and both the private sector and the public sector,” she said. “It’s everyone getting involved, not just one person.”
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