Caregiving: Help is on the way -- not

ALBANY, N.Y., July 24 (UPI) -- When the U.S. House of Representatives approved the Lifespan Respite Care Act last December, its sponsor said, "Help is on the way for family caregivers," but that help won't arrive anytime soon.

That bipartisan measure won unanimous support in Congress at the end of last year and President George W. Bush signed it into law, authorizing $289 million over five years to finance respite care services.

On the surface, it appeared that finally someone was listening and the caregivers' long national nightmare was over -- family caregivers were going to get a break, if only for an hour.

Under the law, the states train volunteers to provide respite services to the estimated 50 million families who care at home for adults and children with special needs. The House sponsor, Rep. Mike Ferguson, R-N.J., knew all about being a caregiver. For six years his father, Tom, cared for his wife, Roberta, during her six-year battle with multiple myeloma -- a type of cancer of the plasma cells. Ferguson said he and his siblings and other relatives were able to give his father a respite from caregiving but that others may not have a similar family support structure to enable the primary family caregiver to take a break.

"Today's action by the House of Representatives represents not only an important victory for family caregivers nationwide, but it also sends America's caregivers a clear message: Your selfless sacrifice is appreciated, and help is on the way," Ferguson said last December.

For purposes of this bill, respite care is defined as providing primary caregivers with the ability to find temporary relief from caregiving -- time to prepare meals, go to the grocery store, run errands or simply to take a nap. For those who need to monitor a family member with autism or Alzheimer's disease 24/7, it can mean all the difference.

Under the Lifespan Respite Care Act, states can apply to the U.S. Department of Health and Human Services for grants to establish respite care programs, but first HHS must develop a way to allocate the funds -- and it hasn't done that yet, because it doesn't have the money.

"Last December the bill approved funding $289 million over five years, but when we got the annual spending bill there was not a single cent included for this program," Angie Lundberg, a spokeswoman for Ferguson, told UPI's Caregiving.

"The congressman worked to get an amendment for the full $40 million for the first year but was disappointed that the chairman of the (House) Appropriations Committee refused."

Ferguson then introduced a $10 million amendment after Rep. David Obey, D-Wis., chairman of the House Ways and Means Committee, said he would not object to that level of funding. Ferguson's amendment won House approval last week.

In a perfect world, HHS would be excited by this program, devise guidelines for funding, the states would develop a program and in a year's time Congress would receive a coherent program from HHS that really assists those in the caregiving trenches. Then the budget battle can begin all over again.

The bottom line is that Congress does not allocate all that much money for the elderly and infirm -- $156 million goes the U.S. Office of Aging -- outside of Social Security, Medicare and Medicaid -- one-half to two-thirds of which pays for those in nursing homes once their assets are depleted.

The truth is that all levels of government have virtually ignored those who need chronic care who are cared for by family. Medicare pays for the heart attack in the hospital, but it does not pay for those needing years of monitoring with heart failure. Outside of some medications, the cost of caring for someone with dementia or Alzheimer's falls to the family, and many are wiped out as a result and quite honestly no one cares.

The official government response that I have been told time and time again has been that America is a country of personal responsibility and parents are a personal responsibility. That's fine; if you pick a drug habit, you pay the consequences, but parents are not something we choose. Currently, government is not equipped and not interested in dealing with the problems of caregivers -- even though they recognize that government-funded programs could not replace the more than $350 billion of care for the elderly and disabled that family caregivers provide.

I wish caregivers had a uniform and on the back written: "I am saving the state $6,000 a month by providing care at home for a parent." Perhaps we would get some more respect.

I am in no way being critical about the Lifespan Respite Care Act, the 170 national, state and local organizations that supported its passage or its main sponsors: Ferguson, James Langevin, D-R.I.; Sen. Hillary Clinton, D-N.Y.; and Sen. John Warner, R-Va. Any bill passed -- especially for a new program -- is a miracle.

But when the needs of millions of caregivers are so great, we have to do better.

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(Alex Cukan is an award-winning journalist, but she has also been a caregiver since she was a teenager. UPI welcomes comments and questions about this column.)

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(e-mail: consumerhealth@upi.com)