The Rhode Island Caregiver Alliance, a consortium of human service agencies, has received $250,000 as a result of the Lifespan Respite Care Act. The funds, provided by the U.S. Department of Health and Human Services, will be used to expand and promote respite care services for families caring for aging or disabled individuals.
The grant is part of $519,000 in funding that has been directed to Rhode Island since the Lifespan Respite Care Act was signed into law in 2006.
“We are really a model for the rest of the country on how best to do respite care,” said Congressman Jim Langevin, who co-authored the act. “Having that little bit of a break in the day can sometimes make a world of difference.”
The funds will be divided among several Caregiver Alliance agencies, including the Rhode Island Division of Elderly Affairs (DEA), the Diocese of Providence, New HOPE Time Exchange and the Parent Support Network, and The Point, the state’s aging and disability resource center. Working together, these agencies have connected with families facing the daunting tasks that go along with providing care.
Many caregivers are part of the sandwich generation, meaning they are caring for an aging parent and trying to maintain that parent’s independence, while still juggling work and raising a family of their own. Langevin called these caregivers an “essential, yet overlooked element of our nation’s health care system.”
“People need to know they’re not alone. [Providing care] can result in substantial emotional, physical and financial constraints on families,” he said.
The congressman estimated that 114,000 Rhode Islanders provide care for family and loved ones. This unpaid care, he said, accounts for as much as $1.4 billion per year in avoided health care costs. In 2009, AARP estimated that family caregivers provided $450 billion in uncompensated care.
“The figures really are staggering. Respite services offer tremendous benefits to families, and to our economy, the benefit of reducing expensive, out-of-home placements,” he said.
Avoiding these out-of-home placements is a priority of DEA, both for financial reasons and for the best interests of the individual.
“The mission of the Department of Elderly Affairs is to preserve the dignity and independence of elderly in the state of Rhode Island. Family caregivers are the absolute foundation of that mission,” said Division of Elderly Affairs Director Catherine Taylor.
Commenting on the health care cost avoidance, Taylor said she believes the numbers are even higher when you factor in the substantial work done by caregivers of those with Alzheimer’s disease.
Funding and promoting respite care is especially important to Taylor, as she is the parent of a child with special health care needs. She said providing care can “get very intense,” and caregivers put their own needs on the backburner. She pointed out that when a caregiver says they are “fine,” there is often a depth of emotion behind that response.
“What does ‘fine’ stand for? Frustrated, isolated, numb and exhausted,” she said.
Respite care offers a break for caregivers. The concept is that individuals – health care professionals or civilian volunteers – take over some responsibility for a period of time for caregivers. That could be a CNA providing personal care to an elderly person with limited mobility or a visiting nurse just spending time with that person so the caregiver can take a break to run their own errands, spend time with family or friends or even just get some sleep.
“These are things that most of us maybe don’t even think about having to make arrangements for,” said Kathy McKeon from the Diocese of Providence.
The New HOPE Time Exchange is expanding the role of respite care providers. Lisa Conlan-Lewis from New HOPE said that in her work with the Parent Support Network, they were seeing many parents getting burnt out from caring for children with significant emotional and behavioral needs. Through that work, the Time Exchange was born.
The New HOPE Time Exchange aims to promote the state’s Timebanks Initiative, in which volunteers offer up any skill or service in exchange for the time of someone else. For example, a carpenter who gives four hours to put up a new shed for someone then has access to four hours of someone else’s time to care for a loved one.
“I think caregivers are used to giving only,” Taylor said. “There is not a single person in Rhode Island who doesn’t have something to contribute.”
New HOPE also conducts background clearances for volunteers. They are in the process of building their volunteer network, and hope to do more of that through this $250,000 grant, which will be implemented over three years.
For caregivers who want to learn more about the Timebanks Initiative or respite care opportunities, The Point (462-4444) is a good place to start. The Point coordinates resources, and meets with families initially for options counseling, an hour-long session that identifies what services are available.
McKeon said the first round of funding from the Lifespan Respite Care Act brought these stakeholders together to establish a consolidated system of respite care.
In the past, the Diocese served only the elderly, but this new grant will extend respite services to people of all ages. They maintain a list of 120 vendors that have agreed to standard rate of reimbursement for situations where volunteer care does not suffice. The availability of these services is set with a sliding income scale, and the Diocese helps up to 240 families each year thanks to this system. McKeon estimates another 150 families will be helped due to the second round of grant funding.
“Caregivers are seeking help in growing and growing numbers every year. We all need to be there for them,” McKeon said.
The $250,000 grant will also be used to develop training and bring volunteer and paid respite programs together to streamline the system. Conlan-Lewis hopes that their portion of the funding will enable them to build a strong Lifespan curriculum to prepare volunteers.
“There’s a huge need,” she said, “We have to build the workforce.”