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Caring for the caregivers.

Taking care of an elderly relative can be a full-time job. But most people acting as caregivers also have to go to work. Here's how states are trying to help.

Arabella Dorth has two demanding jobs: one as a paralegal paralegal n. a non-lawyer who performs routine tasks requiring some knowledge of the law and procedures, employed by a law office or who works free-lance as an independent for various lawyers.  with a San Francisco San Francisco (săn frănsĭs`kō), city (1990 pop. 723,959), coextensive with San Francisco co., W Calif., on the tip of a peninsula between the Pacific Ocean and San Francisco Bay, which are connected by the strait known as the Golden  law firm, another taking care of her 86-year-old mother, who is in the advanced stages of Alzheimer's disease Alzheimer's disease (ăls`hī'mərz, ôls–), degenerative disease of nerve cells in the cerebral cortex that leads to atrophy of the brain and senile dementia. . For three years, Dorth commuted to her mother's home in San Diego San Diego (săn dēā`gō), city (1990 pop. 1,110,549), seat of San Diego co., S Calif., on San Diego Bay; inc. 1850. San Diego includes the unincorporated communities of La Jolla and Spring Valley. Coronado is across the bay. . For the last five years, her mother has lived closer, first in a retirement community, then in a board and care home, now in a nursing home. Dorth spends easily 15 hours a week on tasks that range from doing her mother's laundry to paying her bills to consulting with nursing home personnel. As a result, Dorth's vacation and sick leave are eaten up, as is one day after work, a half-day on weekends and time on the phone during workdays. When asked what keeps her going, she replies, "It's wonderful to see her face light up when she sees me. She might not know who I am, but she knows I'm family." Single with no siblings siblings npl (formal) → frères et sœurs mpl (de mêmes parents) , she relies on outside agencies like the state-supported Family Caregiver A family caregiver is a person who manages or provides direct assistance to a loved one who needs help with day to day activities because of a chronic condition, cognitive limitations, or aging.  Alliance in California. By providing "drawers full of information on Alzheimer's disease and medications," as well as a support group, the program "has saved my life," she says.

Dorth's story is not uncommon. Contrary to the conventional wisdom that Americans today are too busy to care for their own, studies show that unpaid family and friends provide the bulk of long-term care long-term care (LTC),
n the provision of medical, social, and personal care services on a recurring or continuing basis to persons with chronic physical or mental disorders.

Twenty-two million Americans - one in four households - are involved in caring for an older family member, friend or neighbor, according to according to
1. As stated or indicated by; on the authority of: according to historians.

2. In keeping with: according to instructions.

 a 1997 study by the National Alliance for Caregiving (NAC See network access control. ), a nonprofit partnership of organizations for the aging. And the number is expected to increase as people live longer and the baby boom generation ages. Roughly 13 percent of the U.S. population is 65 and older. The baby boomers See generation X.  - the 76 million Americans born between 1946 and 1964 - start turning 65 in 2011. By 2030, nearly one out of five Americans will be over 65.

Given the high cost of long-term care, particularly in nursing homes (averaging $46,000 a year), policymakers have a strong interest in encouraging informal, unpaid elder care arrangements at home and in the community. Although the lion's share of long-term care funds, primarily Medicaid, goes to institutions such as nursing homes, state legislatures A state legislature may refer to a legislative branch or body of a political subdivision in a federal system.

The following legislatures exist in the following political subdivisions:
 have crafted strategies to support families who take care of their older relatives. These include respite programs, direct financial support, state-supported programs for caregivers, tax incentives and family leave policies.

Caring for the elderly is not a "one size fits all" situation. Where one family might need a tax break, another needs information and family care planning. Yet another may need the opportunity to get out of the house twice a week for a break or to run errands.

NO MAGIC BULLETS (jargon) magic bullet - (Or "silver bullet" from vampire legends) A term widely used in software engineering for a supposed quick, simple cure for some problem. E.g. "There's no silver bullet for this problem".  

Most state programs are small and apply to a narrow niche of low-income citizens who care for elderly relatives in their own homes. However, over the past 10 years, states have increasingly appropriated more money for home and community-based programs to assist families with loved ones loved ones nplseres mpl queridos

loved ones nplproches mpl et amis chers

loved ones love npl
 who can no longer take care of themselves due to mental or physical disabilities. Also, a handful of states recently' have added elder care to their tax benefits that once applied only to child care.

A few states have crafted support programs that operate on state funds. California, New Jersey, Pennsylvania, Washington and Wisconsin have the most comprehensive, according to Kathleen Kelly, executive director of the San Francisco-based Family Caregiver Alliance. "States have to use a mixture of options," she says. "There isn't one magic bullet solution."

With budgets ranging from $2 million to $10 million, most state programs operate through county and regional agencies and provide services such as companions or "adult sitters," adult day care, family consultation and care planning, education and training, home health care and support groups.

In California, the Department of Mental Health contracts with the California Family Alliance and its 11 regional resource centers to provide families with information, support services support services Psychology Non-health care-related ancillary services–eg, transportation, financial aid, support groups, homemaker services, respite services, and other services  (including day care and respite help) and training in how to care for their elderly relative. The alliance operates one of the most extensive clearinghouses in the country for information on brain impairments and caregiving (, a service that is needed in more states. "We get so much e-mail from other states because people don't know Don't know (DK, DKed)

"Don't know the trade." A Street expression used whenever one party lacks knowledge of a trade or receives conflicting instructions from the other party.
 who to call," said Kelly.

In Pennsylvania, the Family Caregiver Support Program operates on a state budget of $10 million and reimburses caregivers for some expenses. It pays up to $200 a month for services and supplies and $2,000 for home modifications Home Modification

Alterations made to a home to meet the needs of people with physical limitations so they can live independently (to some degree) and safely. Examples of home modifications include removing throw rugs to prevent slips and falls, installing grab bars in the bathroom
 and special equipment. Families also get counseling and training. The program is for those with incomes less than $41,230 a year for a family of two. If the family earns less than $21,700, it receives full benefits. To qualify, the caregiver must be helping someone 60 or older or one who suffers from Alzheimer's or chronic dementia. They also must live under the same roof. Some 6,500 Pennsylvania families are helped each year, but despite a jump in funding from $4.5 million in 1991 to $10 million this year, from 500 to 1,000 more are normally on a waiting list. Dan McGuire, chief of managed care at the Department of Aging, calls it a "feel good" program that he doubts will ever disappear. Most caregivers receiving the help are in their mid-60s and having difficulty providing the daily chores their loved ones need. "People who are likely to provide care are the least likely to ask for help," McGuire says.

Other states, like Florida, are looking at new ways to provide help. Its Respite for Elders Living in Everyday Families (RELIEF) program now operating in Jacksonville, Orlando and several counties is "a new way to assist families whose family members are incapacitated in·ca·pac·i·tate  
tr.v. in·ca·pac·i·tat·ed, in·ca·pac·i·tat·ing, in·ca·pac·i·tates
1. To deprive of strength or ability; disable.

2. To make legally ineligible; disqualify.
," says Representative Willye Dennis Willye F Clayton Dennis (b. March 14, 1926 in Jacksonville, Florida, USA) is a librarian, civil rights activist and former Florida state legislator.

In 1978, Ms. Dennis founded Fam-Co Learning and Development Center, a non-profit child daycare center.
, who sponsored the legislation with Senator Betty Holzendorf.

Aimed at giving caregivers a little free time for themselves, supporters say RELIEF "fills a gap in the most cost-effective way." What makes it innovative is its focus on low-income clients and the use of volunteers during evening and weekend hours when other programs aren't open.

By contracting with private organizations and area agencies on aging, volunteers are trained in "social respite." They learn about aging, dementia, safety, first aid, communication, communicable diseases communicable diseases, illnesses caused by microorganisms and transmitted from an infected person or animal to another person or animal. Some diseases are passed on by direct or indirect contact with infected persons or with their excretions.  and the stress and strains of giving care. For two to four hours once or twice a week, they read to their assigned client, go for walks or do light meal preparation and housekeeping, depending on whatever the caregiver needs. Some are reimbursed for transportation. Some get $2.55 an hour, and others receive no stipend sti·pend  
A fixed and regular payment, such as a salary for services rendered or an allowance.

[Middle English stipendie, from Old French, from Latin st
 or reimbursement Reimbursement

Payment made to someone for out-of-pocket expenses has incurred.
 at all.

Started in September 1997 with an $800,000 appropriation, the project had 100 community volunteers caring for 152 clients by February. "People love this program," Dennis says. Funding is assured for next year, she reports, and work is under way to develop the popular program statewide.


The vast majority of states help out low-income people with respite care Respite Care

Short-term or temporary care of a few hours or weeks of the sick or disabled to provide relief, or respite, to the regular caregiver, usually a family member.

, which includes adult day care or adult sitters, allowing a caregiver time to go to work or run errands. Medicaid programs in 38 states cover annual respite care for an estimated 250,000 elderly, and Medicaid programs in 40 states cover adult day care, according to Amy Tucci of the American Public Welfare Association. Title an all-purpose social service block grant with few strings attached - is also used to finance such care, but is in danger, according to Tucci. The program suffered serious reductions under the welfare reform law, and further cuts are pending in 1998.

Also tied to federal money in some states are programs that help low-income caregivers with some form of financial assistance. Some Medicaid waiver programs do this, but little is known about how many people get such assistance or how much is being reimbursed. At last count, a 1990 study reported that 35 states and the District of Columbia District of Columbia, federal district (2000 pop. 572,059, a 5.7% decrease in population since the 1990 census), 69 sq mi (179 sq km), on the east bank of the Potomac River, coextensive with the city of Washington, D.C. (the capital of the United States).  provided Medicaid or other payments. Under Medicaid, family members must be licensed as qualified providers, so a very small number of them are actually paid.

The federal Family Leave Act is another policy that might not be as much help for elder care as lawmakers originally planned. Overriding most state plans in 1993, the federal act allows some people to take off from work to care for a seriously ill A patient is seriously ill when his or her illness is of such severity that there is cause for immediate concern but there is no imminent danger to life. See also very seriously ill.  family member. Gail Hunt, NAC's executive director, says that although family leave is an important option, especially for dual income families, in reality many workers cannot afford to use it because the leave is unpaid.

However, a handful of states do have laws more generous than the federal act, according to the National Partnership for Women and Families (formerly the Women's Legal Defense Fund). Vermont goes furthest - granting time off to take a parent, parent-in-law, spouse or child to routine medical, dental or other professional appointments.


Half the states offer a tax break for elder care to people who care for a family member in their own homes and to firms that provide dependent care assistance to employees. By reducing the amount of income taxes owed, the benefits help offset the cost of the care.

Dorth, like many others across the country, would not be eligible for many state tax benefits. For claims to be valid, the elderly relative must live with the caregiver and be financially dependent. These two caveats limit the number able to take advantage of tax breaks.

Delaware Lieutenant Governor lieutenant governor
n. Abbr. Lt. Gov.
1. An elected official ranking just below the governor of a state in the United States.

2. The nonelective chief of government of a Canadian province.
 Ruth Ann Minner Ruth Ann Minner (born January 17 1935) is an American politician and businesswoman from Milford, in Kent County, Delaware. She is a member of the Democratic Party, who served in the Delaware General Assembly, two terms as Lieutenant Governor of Delaware, and is the incumbent , an advocate for household dependent care credits, agrees that these factors restrict the eligibility of some, but emphasizes that while Delaware's law covers elder care, it was primarily crafted for child care. "Low- to middle-income families with children benefit the most from the credit," she says.

Policymakers have focused first on child care because, up until now, that's been the greatest need and the easiest to address. As the population grows older, however, and the number of workers with responsibilities for elder care burgeons, this is sure to change.


Helping an old person is a labor of love that is time consuming, expensive and can interfere with work. Many caregivers spend part of every paycheck on weekly supplies, such as medication and diapers. Periodically, caregivers have to leave work to attend to a crisis at home. For those who qualify, even a small tax break can help offset everyday expenses and pay for extra help at home.

About a third of the states offer either a credit or deduction of expenses and in some it's in addition to the federal benefit.

When Arabella Dorth was asked how she would use a tax credit such as the one offered in Delaware, she said the $1,080 would help her re-energize. If she were a qualified dependent caregiver and a Delaware resident, she could claim a benefit equal to 50 percent of the federal credit. This would amount to an additional $360 on top of the maximum $720 credit for one qualified dependent on the federal income tax return. Dorth says, "While $1,080 wouldn't go far, it would allow a person to hire some extra help every now and then so she could take a break from her demanding situation."


Many caregivers say their tasks would be easier if they had an adult day care facility at their work or nearby. For some, center-based care has more to offer than an assisted living as·sist·ed living
A living arrangement in which people with special needs, especially older people with disabilities, reside in a facility that provides help with everyday tasks such as bathing, dressing, and taking medication.
 situation at home where an aide from an outside agency comes in and "elder-sits." Although the aides are trained in custodial care Custodial Care

Non-medical care that helps individuals with his or her activities of daily living, preparation of special diets and self-administration of medication not requiring constant attention of medical personnel.
, they often lack important psycho-social and therapeutic skills. Many in need of care - such as Alzheimer's patients - also need stimulation, activity and companionship companionship

the faculty possessed by most truly domesticated animals. They are social creatures and have a great need for the companionship of other animals. Animals in groups are quieter and more productive as a rule.
. A good center provides activities to keep their minds busy, help them connect with other people and keep them from getting depressed.

Illinois, Mississippi, Montana and Rhode Island Rhode Island, island, United States
Rhode Island, island, 15 mi (24 km) long and 5 mi (8 km) wide, S R.I., at the entrance to Narragansett Bay. It is the largest island in the state, with steep cliffs and excellent beaches.
 offer companies a tax credit for providing day care assistance, either through a direct benefit payment or by actually hosting day care at the work site or at a community facility.

Representative Carmel Wells-Smith, who sponsored the Mississippi bill that added elder care to employer tax credits, helps an elderly family member - her 100-year-old grandmother. She and her mother struggled with the decision of how to care for her grandmother while they worked, and eventually converted part of her mother's office into their own care space. But Wells-Smith says that their situation is unique. "Most people don't have that opportunity," she says. She hopes the tax benefit results in more options for workers.

"In Rhode Island there's an increased interest in looking at elder care as part of family policy," says Senate President Pro Tern Charles Fogarty who encourages a wide range of policy alternatives that help older citizens. The senator, who serves as chairman of the state's Long Term Care Coordinating Council, says that employers are starting to recognize that many of their workers are part of the "sandwich generation Sandwich Generation

The generation of middle-aged individuals who are pressured to support both aging parents and growing children.

Those of the sandwich generation are caught between the obligation to care for their parents--who may be ill, unable to perform
" with dual responsibilities - caring for both children and aging relatives at the same time. "In the long run," says Senator Fogarty, "helping businesses adopt family friendly policies is also good economic policy."

Companies, however, have been slow to establish adult care programs. Mississippi credits employers for 50 percent of the expenses they incur for child or elder care, but most companies have concentrated on child care. Representative Wells-Smith is convinced this will change as the population ages and more national attention focuses on the needs of the elderly. "I expect more employer participation in elder care in the future," she says.


Seven in 10 family caregivers are women in their mid-40s, caring for elderly female relatives, most often under the same roof, according to the National Alliance for Caregiving (NAC). Relatively few recipients live in a nursing home or in an assisted living or group facility. Four in 10 caregivers simultaneously care for their children, and most work full time (51.8 percent) or part time (12.3 percent).

On average, caregivers spend 18 hours per week for four and a half years at the task, although nearly one in five provides constant care (at least 40 hours a week). They help with such things as transportation, housework, grocery shopping, meal preparation, financial management and arranging for or supervising outside services. More than half help with such things as getting in and out of a bed or chair, dressing of feeding, and a fourth help with bathing and toileting. Caregivers are more likely to give up free time and time with other family members and, as a result, experience physical strain and emotional stress.


Tax incentives

Seventeen states - Alaska, Arkansas, Delaware, Hawaii, Iowa, Kansas, Kentucky, Maine, Minnesota, Nebraska, New York New York, state, United States
New York, Middle Atlantic state of the United States. It is bordered by Vermont, Massachusetts, Connecticut, and the Atlantic Ocean (E), New Jersey and Pennsylvania (S), Lakes Erie and Ontario and the Canadian province of
, North Carolina North Carolina, state in the SE United States. It is bordered by the Atlantic Ocean (E), South Carolina and Georgia (S), Tennessee (W), and Virginia (N). Facts and Figures

Area, 52,586 sq mi (136,198 sq km). Pop.
, Ohio, Oregon, Rhode island, South Carolina South Carolina, state of the SE United States. It is bordered by North Carolina (N), the Atlantic Ocean (SE), and Georgia (SW). Facts and Figures

Area, 31,055 sq mi (80,432 sq km). Pop. (2000) 4,012,012, a 15.
 and Vermont - and the District of Columbia offer individual taxpayers a credit for at-home dependent care expenses. Idaho, Montana and Oregon offer similar tax relief, but do not tie it to federal qualifying levels. Idaho, Maryland, Massachusetts and Virginia allow taxpayers to deduct household and other expenses, and Alabama, Arkansas, Illinois, Mississippi, Montana and Rhode Island offer income tax breaks for employer-provided assistance.

Family Leave Policies

Family leave laws in 11 states and the District of Columbia are slightly more generous than the federal law. Maine, Minnesota, Oregon, Vermont and the District of Columbia extend the benefit to firms with fewer than 50 employees. Connecticut, Rhode Island and D.C. allow workers to use more than 12 weeks a year, but no more than 24 weeks in a two-year period. Alaska extends the benefits and offers more than 12 weeks of unpaid leave for public employees only. Georgia, Hawaii, Iowa, North Dakota North Dakota, state in the N central United States. It is bordered by Minnesota, across the Red River of the North (E), South Dakota (S), Montana (W), and the Canadian provinces of Saskatchewan and Manitoba (N). , Oregon and Vermont broaden the definition of "family member" to include grandparents grandparents nplabuelos mpl

grandparents grand nplgrands-parents mpl

grandparents grand npl
 or in-laws.

Respite Care

Under the home- and community-based waivers from the federal government, 43 of the 67 waiver programs in 38 states cover respite care annually. Forty-five programs in 40 states cover adult day care, according to the American Public Welfare Association (APWA APWA American Public Works Association
APWA American Public Welfare Association
APWA All Pakistan Women's Association

Direct Caregiver Payments

Many states pay relatives for providing home care either through Medicaid waivers or through state-funded programs. Thirty-five states and D.C. authorize some form of financial payment.

Caregiver Programs

Several states including Arizona, California, Minnesota, New Jersey, New York, Pennsylvania, Washington and Wisconsin have specific state programs to assist caregivers. Most provide information, counseling and assistance with respite care.

Wendy Fox-Grage tracks aging and long-term care issues for NCSL NCSL National Conference of State Legislatures
NCSL National College for School Leadership
NCSL National Conference of Standards Laboratories
NCSL National Council of State Legislators
NCSL National Computer Systems Laboratory (NIST) 
. Jennifer Grooters specializes in tax and spending issues for NCSL.
COPYRIGHT 1998 National Conference of State Legislatures
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1998, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Title Annotation:care of an elderly relative
Author:Grooters, Jennifer
Publication:State Legislatures
Date:Jun 1, 1998
Previous Article:Hauling dangerous cargo - feds drag their feet.
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