Category Archives for Caregivers

Report Examines Myths, realities of Consumer -Directed Services

Published in Pawtucket Times on March 17, 2003

Eighty-nine-year-old Lillian Brannon raves about the Arkansas-based “Independent Choices (A Cash and Counseling Demonstration Program) that allowed her to stay independent and at home with the assistance of four aides.

The program “has really changed my life so much,” she says. “It has really helped me to live more independently than I have ever have …I would not trade it for anything.”

Tammy Svihla, who suffers from MS gives a thumbs-up to the New Jersey-based “Personal Preferences” programs that has allowed her to more creatively used Medicaid funds. Svihla notes she was able to purchase a “Lazy-boy” lift chair, usually not covered by Medicaid. It was logical for Svihla to purchase the lift chair because it was difficult for her to get up from her couch because of soft cushions.

These two  testimonials, among three others, set the tone for a newly released report that examines the myths and realities that now surrounds the philosophy of consumer-directed services.

The orientation allows consumers to make choices about the services they receive, assess their own needs, and determine how ad by whom these needs should be met, and then  monitor the quality of services they have received.

“The Myths and Realities of Consumer-Directed Services for Older Persons,” authored by Marie R. Squillace, PhD., federal project officer, National Family Caregiver Support Program with the U.S. Department of Health and Human Services, and President and CEO James Firman, Ed.D., of the National Council on Aging, attempts to build upon current knowledge obtained from research and demonstration projects to make   consumer direction “an integral part of the options available for all older persons who may need long-term care.”

Throughout the 24-page report the authors use personal experiences, case studies, and research to dispel 12 myths about the philosophy of consumer-directed services.

Let’s take a look at three of the myths.:

Squillace and Firman urge the reader to not believe the myth that consumer-directed services are not appropriate for seniors with disabilities or for those with cognitive impairments.

Here’s the reality: studies of programs like California’s In-Home Supportive Services (IHSS), show that many elderly can express daily preferences for care and can benefit from that control. For more than 30 years, low-income persons over age 65 who are enrolled in the IHSS program have  hired, fired, trained, scheduled and supervised individual providers.

Moreover, the Family Caregiver Alliance in San Francisco adds research indicates that persons with early to moderate cognitive impairment still can express daily preferences for their care, sharing their values and preferences.  For those with significant cognitive disabilities, a University of Maryland Center on Aging report suggests family caregivers, a circle of friends, or close associates who know the consumer well can interpret the person’s non-verbal expressions.

Another myth of the Squillace and Firman report is that “self-directing consumers will “misuse funds” or “be exploited.”

Not true, say the authors, citing “Cash and Counseling Programs” that will allow consumers to use their alliances to purchase needed services so they can stay in their own homes with the assistance of a fiscal intermediary organization (FIO).

In reality, the authors note most prefer to have their funds held by the FIO, which conducts bookkeeping and accounting services to help them manage their individual helpers and pay taxes for their workers. The management can minimize concerns about misuse of funds and financial exploitation of vulnerable individuals while diminishing the administrative responsibilities placed on self-directed consumers, the report says.

Finally, some spread the myth that consumer direction is just an experiment, noting more, nothing less. But Squillace and Firman say this philosophy has progress “far beyond the experimental phase.

A growing number of consumer advocates, program administrators and policy makers are now embracing this philosophy.”

The authors recite a 2001 survey that identified 139 consumer-directed service programs that were operating across most of the nation, except Tennessee and the District of Columbia. “The estimated total number of people being served by these programs reached about half a million.

Squillace and Firman state: “Consumer direction is not a sliver bullet or a panacea for the nation’s long-term care challenge, but it is an important part of the solution.”

I believe that.

If they haven’t, hopefully the directors of the Department of Elderly Affairs and Human Services will develop programs that encompass the philosophy consumer directed services.  Enhanced quality of life can be a result of aging baby boomers and seniors controlling the choice over the purchase of their long-term care services. Ultimately, it is all about empowerment.

For more information about consumer-directed care, visit www.consumerdirection.org.

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Grandparents Take an Active role in Parenting and Caregiving

Published in Pawtucket Times on August 12, 2002

Susan Sweet, an elder rights advocate and a full-time consultant to nonprofit groups, has a jam-packed schedule that consumes much of her time.

However, the East Providence resident puts her two small grandchildren at the top of her schedule.

Grandparenting is the best time in Sweet’s life, who noted this role allows her to share both life experiences and wisdom with Zackary, age seven and a half and his sister Erika Lee, who is almost 10 months.

“My job as a grandparent is to expose Zackary and Erika Lee to things that they would not other wise be exposed to,” the 61-year-old Sweet says.

New experiences with the youngish grandmother include exposure to the world of music, art and cultural and ethnic diversity of the world.

With her grandchildren living on Cape Cod, Sweet keeps in constant contact through e-mail and telephone calls. Zachary visits grandma every two weeks, where she takes him out and about the Providence Children’s Museum, Waterfire and even to the aquarium in Mystic, Conn. Erika will get her turn to visit Sweet when she gets older.

“Grandparents are magical to their grandchildren,” especially those who don’t have the burden of everyday parenting responsibilities, Sweet insists. Moreover, the elder generation becomes the repository of a family’s history, where grandchildren can learn where they came from.

Like Sweet, grandparents across the nation are becoming actively involved with intergenerational parenting and caregiving, and this role is becoming more commonplace.

A newly released AARP study finds that aging baby boomers and seniors are taking a more active role in raising their grandchildren.

Almost half of those surveyed were under 50 when their first grandchild was born. The ages of those surveyed ranged from 45 6o 100 years, with a mean age of 64.

According to the AARP study, today’s grandparents believe they are teaching their grandchildren values and family history, entertaining them and listening to their problems.

About 68 percent of those surveyed see a grandchild every one or two weeks, and almost 24 percent say they see their grandchild from once a month to once every few months.

However, the study found that a principal barrier to more frequent contact was living too far away – almost 45 percent of the respondents said their grandchildren live more than 200 miles away from them. Another barrier to frequent contact was the grandchildren’s busy schedules (22 percent).

In those case, grandparents reach out and touch a loved one by phone – eight in 10 grandparents (80 percent) contacted a grandchild by telephone at least once every couple of weeks.  A smaller number (12 percent) reported using traditional mail  (i.e. letters, greeting cards, or videos) at least once every couple weeks, and 54 percent sent traditional mail at least every few  months.

The AARP survey found the most popular topics of conversation between grandparents and grandchildren are issues relating to school (84 percent), morals or values (78 percent), planning future visits (72 percent) and daily activities (72 percent).

However, conversations between grandparents and their grandchildren did not shy away from sensitive topics.

Almost 65 percent speak with their grandchildren about religion and spirituality. Conversations also centered on cigarettes (47 percent), alcohol (43 percent) and illegal drug use (45 percent). Almost a quarter (24 percent) said they talk with their grandchildren about sex.

Grandparents are also providing significant financial support for their grandchildren on a day-today basis. On average, grandparents report they spend $500 a year on their grandchildren with many spending money on their basic daily needs. About 52 percent provide financial help with the educational needs of their grandchildren, and almost 45 percent report they hep with living expenses. Meanwhile, about 25 percent say they assist with a grandchild’s medical expenses.

Fifteen percent of grandparents reported they provide child day-care services for their grandchildren to assist the working parent, nearly 24 percent of those also say they provide such care at least once a week to once every couple of weeks while the parents are not at work. Almost 80 percent who provide child care are looking after one or two grandchildren; another 17 percent care for as many as three or four grandchildren.

Finally, the survey finds that grandparents of all ages are involved in some form of physical activity with their grandchildren. More than half (53 percent) have exercised or played sports with their grandchildren within the past six months, and at least half in each age group engage in such activities with grandchildren.

Study: Communication Gap Exists Between Elderly and Their Children

Published in the Pawtucket Times on May 21, 2001

Everyone knows that communication gaps oftentimes occur between teenagers and their parents. According to the findings of a newly released AARP study, this problem also occurs in the later years too, between elderly parents and their adult children.

The AARP study found that most adult children never talk with their elderly parents about their aged-related needs until a crisis occurs.

Of those surveyed, two out of three adult children have never had this conversation with their aging parents.

Additionally, the findings indicated that more adult children and their older parents believed that their parents had a problem that affected their independence.

Moreover, the researchers say that the elderly parents are more than twice as likely as their adult children to say that their offspring had given them no help when they had a problem in the past five years.  While many elderly parents would seek information f rom their adult children about how to live independently, one in three adult children don’t know what type of information to give their parents or even where to locate it.

Grace Lebow, Co.-Director, of Aging Network Services, a nationwide care management service based in Bethesda, Maryland, believes “it’s never too late to open up communication with your elderly parents.”

However, “Many aging baby boomers find it difficult to see their parents age and become less parental to them,” states the clinical social worker specializing in working with older persons.

“Sometimes both older parents and grown children will think they are protecting each other by not addressing delicate subjects such as finances, wills, medical, durable power of attorney, and prepaid funerals,” Lebow tells The Times.

“The longer you avoid discussing these sensitive issues, the harder it will become when a future crisis occurs.”

Adult children often complain that their parents avoid or even refuse any discussions. Meanwhile, even if elderly parents are willing to talk with their adult children, oftentimes it’s the aging baby boomer children who are the ones who are in denial,” Lebow says.

“The adult children must become more receptive to listening to their signals instead of changing the subject and turning off the conversation.” She urges the aging baby boomers to tune in and pick up the parent’s lead.

For both generations, Lebow calls each to “listen to each other and become open for discussion.”

Sometimes a sibling might block needed conversations about age-related issues.

To circumvent this obstacle, consider writing a letter to this sibling and to the elderly parent, Lebow recommends, stating your feelings and how important you consider holding a family meeting to discuss your older parent’s needs.

Or consider bringing in the family friend or professional to get the dialogue jumpstarted, Lebow adds.

“It may even take the personal experiences of a friend of the parent to bring the issues home to both the elderly parent and adult children.”

Professionals, like family physicians or lawyers, who the older person trusts might be brought into the communication impasse as an alley to discuss the importance and the need for taking steps such as signing a living will, durable power of attorney or the need for prepaid funerals.

Aging specialist Nora Jean Levin, quoted in AARP’s brochure “Family Conversations that Help Parents Stay Independent,” notes that a conversation can help “plan for the future.”

She recommends working with older parents to create personal and financial profiles, including information such as the parent’s Social Security numbers, insurance coverage, medical records, and financial status.  By gathering this information, you might uncover current or potential needs for help.

As your older parent’s health and financial needs continue to change over time, continue to keep up your conversations on a regular basis.

To receive a pamphlet, “Family Conversations that Help Parents Stay Independent,” call Betsy L. Draper, of AARP, at 617 723-7600; or for information on Aging Network Services or to order a copy of Coping with Your Difficult Older Parents: A Guide for Stressed Out Children, by Grace Lebow & Barbara Kane, call 301 657-4329.