Respite care in demand despite $20M budget; governor creates program

They provide more than three-fourths of all care for people with chronic, longterm illnesses or disabilities.

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“If you take that away, our system would come to a grinding halt,” said David Best, caregiver resource specialist with the state Department of Economic Security. “The workload and the stress is off the charts.”

So it is that caregivers are at greater risk for disease and depression themselves. They’re forced to take time off work and face lower wages, less job security and shrinking retirement benefits.

Caregivers tell researchers that what they need most is an afternoon or a weekend off from their 24/7, emotionally draining, physically demanding jobs. Respite has been shown to improve the health of caregivers and, in turn, make them better

With Gov. Janet Napolitano’s signature Monday, Arizona became the fifth state to launch a formal respite care program that will fill gaps in services, laying the groundwork for millions of federal dollars.

The new law establishes the Lifespan Respite Care Program with $500,000 and a full-time employee, an advisory committee and mission to find out who needs respite care the most, but can’t get it.

As it is, some 546,000 people in Arizona care for a spouse, child or other family member — care that’s worth an estimated $5.6 billion, according to an AARP survey released Monday.

Taking a break from caring for a loved one can save marriages, keep children from being institutionalized, improve health and save money.

Still, it’s often impossible for family caregivers to get a breather.

Respite care is in short supply and most people who say they need it don’t get it, others get less than they need and still others don’t even know it’s available to them.

That’s despite the fact that the state spent roughly $20 million on respite care last year. able to care for their loved ones.

Denied a breather, they burn out. Some of them even give up, sending children or spouses into institutional settings.

“We get depressed when we’re ready to burn out,” says Lois von Halle, 60, of Scottsdale, who works full time and cares for her husband, Brian, who has multiple sclerosis. “You have a lot of emotions that are always there.”

There was a time when von Halle thought about quitting. Angry outbursts and depression accompanied her husband’s declining physical health. She did the math and figured she could support her three children as a single mother.

“But then I realized I didn’t want to,” she recalls. “I didn’t want to be living without him. Whatever it was, I had a bond there.”

They couldn’t afford respite care as Brian was no longer working and his health declined quickly. Because of their age and income, the von Halles didn’t qualify for any of the four state-run respite programs.

The state departments of Economic Security and Health Services offer respite for caregivers of the seriously mentally ill, developmentally disabled and those over age 60. Respite also is a benefit under the Arizona Health Care Cost Containment System’s long-term care program.

Caught in the cracks are those caregivers and their loved ones, mostly between 18 and 60 years old, who are neither poor enough, sick enough nor disabled enough to qualify. Others who qualify are on waiting lists or get a fraction of the respite they request. “We need to identify precisely where those gaps lie so we can fill them,” Best said.

The respite program, originally sponsored by Sen. Carolyn Allen, R-Scottsdale, was tucked into one of three budget bills the governor signed into law Monday. It’s patterned after federal legislation that created a national program last year and required states to have this type of framework to qualify for federal funding.

Money to fund the national respite program, however, is not included in either the House or Senate budgets. Advocates will try to convince federal lawmakers to put $40 million into the spending plan when they return to work after the July 4th holiday.

“Respite care is not a luxury but an absolute necessity,” said Bonnie Danowski of Scottsdale. She cares for her husband, Jim, who has multiple sclerosis, and lobbied for the bill on behalf of Valley Interfaith Project.

The other Lifespan Respite Care programs are in Oregon, Nebraska, Wisconsin and Oklahoma.