Caregiver and client Arizona,Illinois, Nebraska, New Jersey, New York, Rhode Island andWisconsin are considering caregiver tax credit legislation, andAARP expects measures also to be introduced in Florida,Massachusetts and Ohio. (Photo: Shutterstock)

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Gloria Brown didn't get a good night's sleep. Her husband,Arthur Brown, 79, has Alzheimer's disease and had spent most of thenight pacing their bedroom, opening and closing drawers, andputting on and taking off his jacket.

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So Gloria, 73, asked a friend to take Arthur out for a few hoursone recent afternoon so she could grab a much-needed nap. She waslucky that day because she didn't need to call upon the home health aide who comes to their house twicea week.

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The price of paying for help isn't cheap: The going rate in theSan Francisco Bay Area ranges from $25 to $35 an hour. Gloria Brownestimates she has spent roughly $72,000 on caregivers, medicationsand supplies since her husband was diagnosed four years ago.

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Related: Add caregiver status to health records, Alzheimerpanel says

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“The cost can be staggering,” said state Assemblyman JimPatterson (R-Fresno), author of a bill that would give family caregivers in California a taxcredit of up to $5,000 annually to help offset their expenses.

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A 2016 study by AARP found that the average caregiver spends $6,954 ayear on out-of-pocket costs caring for a family member. Theexpenses range from $7 for medical wipes to tens of thousands ofdollars to retrofit a home with a walk-in shower or hire outsidehelp.

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AARP, a lobbying organization for people 50 and older, ispushing similar bills in at least seven other state legislaturesthis year, said Elaine Ryan, the group's vice president of StateAdvocacy and Strategy Integration. Arizona, Illinois, Nebraska, NewJersey, New York, Rhode Island and Wisconsin are consideringlegislation, and AARP expects measures also to be introduced inFlorida, Massachusetts and Ohio.

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In Wisconsin, two Republicans and two Democrats are behind thatstate's tax credit measure.

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“We need a whole discussion about how we can best keep people athome and meet their needs,” said state Rep. Debra Kolste, aDemocrat who explained that most people know someone who is caringfor a family member. She hopes the measure can make it through theRepublican legislature and be signed by Wisconsin's Democraticgovernor.

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New Jersey approved a state income tax credit in 2017specifically for caregivers of wounded veterans. However, effortsin other states have failed, including in Arizona last year and Mississippi and Virginia this year.

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At the federal level, bills that would have created a federal income tax credit of upto $3,000 never got out of congressional committees last year.

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“Whether I'm in Billings, Mont., or in Mississippi, thecaregiver tax credit is something that people are asking for,” Ryansaid. “All they're asking for is a little financial help to offsetthese costs.”

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A tax credit, said Brown and other caregivers, would be welcomerelief to the estimated 4.5 million family caregivers in California who care for aloved one with a chronic, disabling or serious health condition.Nationwide, the AARP estimates there are about 40 million peoplecaring for family members.

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The Browns, who have been married 51 years and live in SanMateo, Calif., have good medical coverage but, like most seniors,live on a fixed income.

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As her husband's disease progresses, Gloria Brown expects coststo escalate. For instance, she wants to install bars in thebathroom to help prevent her husband from falling, and anticipatesshe will need more professional help.

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“I think we're just moving into that stage where I'm going tosee the dollars going out for things that will help to make thingseasier for him at home and more comfortable,” Brown said. “It's acost you just hadn't anticipated.”

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Long-term caregiving has emerged as one of the major issues inCalifornia's Capitol this year, with proposals ranging from naminga state “Aging Czar” to funding a new cash benefit for long-term care services. In his State of the Stateaddress last month, Gov. Gavin Newsom called for a master plan for aging.

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“I've had some personal — and painful — experience with thisrecently,” Newsom told the joint session of the legislature.

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Newsom, whose father had dementia and died last year, also hastapped former first lady Maria Shriver to lead a new Alzheimer'sPrevention and Preparedness Task Force, and has asked lawmakers toapprove $3 million in state funds for Alzheimer's diseaseresearch.

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Patterson's bill would provide up to a $5,000 state income taxcredit to family caregivers for five years, starting in tax year2020. They would be reimbursed for 50 percent of eligible expenses,such as retrofitting a home, hiring an aide and leasing or buyingspecialty equipment. The credit would be available to individualswho make up to $170,000 a year, or joint income tax filers who makeup to $250,000.

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Patterson, a Republican in the minority, is hopeful he canconvince his colleagues that giving people a tax credit isfinancially sound because it would enable caregivers to keep theirloved ones at home rather than relying on more expensive governmentservices.

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“If members of the legislature and the governor would lookthrough the eyes of their own families, friends and neighbors … Ithink it can be passed and be signed,” Patterson said.

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But the measure faces competition for a slice of California's$21 billion surplus, from proposals by the governor and lawmakersto boost funding for education, health care, housing and dozens ofother programs.

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For Pam Sogge of Oakland, Calif., a tax credit would allow herto hire a home health aide for an additional three hours aweek.

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Her husband, Rick Sogge, 61, has early-onset Alzheimer's andbecomes frantic when left by himself. Sometimes when she leaves himalone in another room of their home, he searches for her every twominutes.

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Because Rick Sogge is still physically healthy, most of thecouple's caregiving expenses pay for part-time help to take him onoutings so Pam can work, run errands or go to the doctor'soffice.

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“You have a very uncertain financial future. You don't knowwhat's going to happen. You don't know how long it's going to take.So you're very conservative,” said Pam Sogge, 56, who has beencaring for her husband for five years. “A tax credit, in a way,it's permission and encouragement to get some help.”

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This KHN story first publishedon California Healthline, aservice of the California HealthCare Foundation.

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Kaiser HealthNews (KHN) is a national health policy news service. It is aneditorially independent program of the Henry J. Kaiser Family Foundation whichis not affiliated with Kaiser Permanente.

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