RESPITE: The Costs
What to expect to pay—and where you might find some funding
Advocates for caregivers have been pushing for more funding for respite care. In 2006, the National Respite Coalition lobbied to pass the Lifespan Respite Act that helps states set up programs to coordinate respite care and to give states competitive grants to establish additional respite programs and funding.
"The majority of caregivers have too much money to be able to get Medicaid and not enough to buy the services they need,'' says Suzanne Mintz, president and co-founder of the National Family Caregivers Association. Mintz is a family caregiver herself, taking care of her husband who has multiple sclerosis.
in a 2008 survey by the MetLife Mature Market Institute, the highest average hourly rates for homemaker/companions ($26) and home health aides ($28) were found in Minnesota. The lowest average rates ($12 for both homemaker/companions and home health aides) were in Louisiana. Vermont was the most expensive state for adult day services ($141 per day average)—Alabama, the least ($27). To find out how your state compares, go to www.MatureMarketInstitute.com.
While costs can vary greatly by services and region, here’s the latest national average unveiled by the survey:
•$18 per hour for a homemaker/companion.
•$20 per hour for a home health aide.
•$64 per day for an adult day center outside the home.
Most health insurance plans do not cover respite care, but long-term care insurance usually will. Be sure to check your coverage.
Respite funding may be available through your local area agency on aging. This was established as part of the 2000 National Family Caregivers Support Program created under the Clinton administration that provided $160 million for such care. The program also included aid to provide for grandparents aged 55 and over taking care of their grandchildren who are younger than 18, as well as caregivers of any age taking care of someone with neurological conditions such as Alzheimer's, dementia, multiple sclerosis and other such ailments.
Check with your local Area Agency on Aging to see what funds you might qualify to receive. Call the national Eldercare Locator at 800-677-1116 or go to www.eldercare.gov.
"Low-income caregivers may also get paid respite through Medicaid, depending on their state's program. Some states allow Medicaid to offer a wide range of services for individuals who otherwise would be institutionalized," says Bob Wardwell, vice president for regulatory and public affairs for the Visiting Nurse Associations of America. For information about what your state's Medicaid coverage includes, contact the VNAA at (202) 384-1420 or call your state's Medicaid office.
Fifteen states have programs called "Cash and Counseling" that allow Medicaid recipients more choice in procuring goods and services, and hiring aides —even family members or friends—to provide care, including respite.
The program was sponsored by the Robert Wood Johnson Foundation, the U.S. Department of Health and Human Services and the Administration on Aging. The aforementioned states were awarded grants to implement the program, which allows Medicaid patients to hire their own personal care aides and purchase their own services. Illinois started its "cash and counseling" program with a grant from the Retirement Research Foundation. Minnesota and New Mexico also created similar programs. Also, states no longer need to have approved "waivers" to offer flexibility in Medicaid coverage. "Cash and counseling" options are also now available through services funded by the Older Americans Act.
For more information on "cash and counseling" options in your state, go to www.cashandcounseling.org.
Six states—Oregon, Wisconsin, Nebraska, Oklahoma, Arizona and Delaware—have a statewide program known as Lifespan Respite. For those living outside these states, you can get help online through the ARCH National Respite Network's respite locator service. This database lists respite services for all ages and conditions in all states but may not include every provider. Go to www.eldercarelocator.org
Military and veteran's insurance cover respite and some workman's compensation may also cover it. Also, Medicare provides some coverage, but only for in-patient respite care at a hospice facility.
Because most respite has to be paid out of pocket, advocates say you may want to talk to your loved one about becoming a signatory on his or her savings and checking accounts in order to have access to funds to pay for this care. You may also want to seek powers of attorney that provide authority to control and access all financial matters. If healthcare is going to be very costly, the patient can also set up a trust for his or her health needs, allowing you access in order to help finance care. Donna Schempp, program director for the Family Caregiver Alliance, suggests you consult with an attorney.
"You have to have the legal paperwork ready when you are taking care of someone," says Schempp, "so you can add your name to their accounts or get powers of attorney." She also suggests consulting an attorney about seeking a "springing power of attorney," which allow you to assume financial control if certain conditions established in the document are met, such as your loved one's being declared incompetent.
If healthcare is going to be very costly, advocates suggest that you talk to your loved one about establishing a trust for his or her health needs, allowing you access to the funds as trustee.
Meanwhile, the effort to expand funded respite care continues. But it's a hard battle, says Jill Kagan chairperson of the National Respite Coalition. "I've had a lot of members of Congress ask, ‘Why do we have to pay a babysitter?' The[ir] focus is on research. We try to explain."