By Maureen Maigret
Across the nation unpaid family caregivers provide 84 percent of the care needed by family members of all ages. Caregiving is the new norm for many adults. Husbands and wives are caring for their spouses who can no longer carry out daily activities such as bathing and dressing. Children are caring for aging parents or siblings with chronic care needs. Parents are caring for children with significant disabilities.
They are folks like Andy, who for almost 30 years lovingly cared for his wife who suffered from a severe brain injury in her early 40s. And Christine, who first cared for her mother before she died and now cares for a chronically ill sister with mobility challenges.
Many of those with care needs require round-the-clock assistance. Some need ventilators to aid with breathing. In Rhode Island the value of these unpaid caregivers was estimated at $1.8 billion if that care was provided by paid caregivers (AARP.) An alarming number, indeed, if the burden of that care needed shouldering by government.
Although caregiving can be most rewarding, it can also be challenging and result in considerable stress for the caregiver — physical, mental and/or financial. To recognize and value the important contributions made by our caregivers, the Aging in Community Subcommittee of the state Long Term Care Coordinating Council prioritized advocating for caregiver support legislation to support and assist caregivers across Rhode Island.
The legislation under consideration would:
• Expand eligibility for Elderly Affairs Home and Community Co-Pay program from 200% to 250% of the poverty level and add persons ages 19-64 with Alzheimer’s/dementia to the program (H5566 by Rep. Joseph Solomon; S280 by Sen. Walter Felag). This program helps caregivers financially by paying a portion of home care and adult day services for home-bound persons age 65 and over with personal care needs. Funds needed for the income expansion are included in Gov. Gina Raimondo’s proposed budget.
• Add $185,000 to Elderly Affairs budget to restore past cuts for respite care and address a waiting list of 102 persons (H5385 by Rep. Julie Casimiro; S438 by Senator Felag). The respite program provides small subsidies to pay for a range of services that give family caregivers a “break” from the stress of caring for a relative or friend.
• Gradually expand the Temporary Caregiver Insurance program from 4 to 6 to 8 weeks to put Rhode Island more in line with other states with TCI laws; add grandchildren, siblings and care recipients and increase wage replacement (H5643 by Rep. Christopher Blazejewski; S765 by Sen. Gayle Goldin). TCI is entirely paid for by employees and offers partial wage replacement with job security for persons needing to take leave to care for a family member.
• Assess caregiver needs for persons on Medicaid and create a statewide family caregiver support association (H5867 by Representative Casimiro; S294 by Sen. Mary Ellen Goodwin).
• Adopt the updated Alzheimer’s State Plan prepared by the Long Term Care Coordination Council. The plan calls for training of care providers to assess and care for persons with dementia, community education and better support for family caregivers (H5569 by Rep. Mia Ackerman; S310 by Sen. Cynthia Coyne).
We appreciate the legislative sponsors and the many co-sponsors of these bills for recognizing the amazing work carried out by our family caregivers and that supporting our caregivers is a sound social investment. While the cost to the state in passing this caregiver support legislation is minimal the benefits to hundreds of Rhode Island family caregivers will be immeasurable. I urge members of the General Assembly to pass the 2019 caregiver support agenda.
Maureen Maigret is a former director of the state Department of Elderly Affairs. She is co-chair of the state Long Term Care Coordinating Council and chair of its Aging in Community Subcommittee, which was established by law in 2014.