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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Lawmakers Consider Proposals to Reduce Costs of Prescription Drugs

Published in the Pawtucket Times on April 15, 2002

Amid the political bickering over the separation of powers bill and the controversy over allowing Rhode Islanders to vote next November on bringing gambling to the Ocean State, the Rhode Island General Assembly is getting around to considering three legislative proposals with broad public and bipartisan political support.

In the shadow of a huge state budget deficit, bills strongly endorsed by both senior and disabled advocates, would make pharmaceutical costs affordable while not costing the state one penny.

It was standing room only last Wednesday in Room 35 at a House Finance Committee hearing, chaired by Chairman Steven Costantino (D-Providence), of the subcommittee on human services. The legislative hearing, lasting almost four hours, drew the attention of the Rhode Island Commission on Aging, the Forum on Aging, the Gray Panthers, and Choices, to name a few.

Dozens of aging and disability advocacy groups, staffers of the Department of Elderly Affairs and the Department of Human Services, and lobbyists for the powerful pharmaceutical industry came to listen to testimony that would officially kick of the state’s debate on lowering pharmaceutical costs for seniors and persons with disabilities.

Under on legislative proposals (H 7291/S 2729), the state Department of Human Services would seek a waiver from the federal government allowing Rhode Island to use Medicaid funding to pay for prescription drugs for low-income seniors with incomes of up to $ 17,720 and couples with incomes up to  $ 23,880.

This bill, authored by Lt. Gov. Charles Fogarty and sponsored by Rep. Constantino and House Finance Chairman Gordon Fox, would enroll approximately 90 percent of the 37,500 seniors now enrolled in the Pharmaceutical Assistance for the Elderly Program (RIPAE) – the state’s pharmaceutical program. Because these seniors would now quality for prescription drug coverage under Medicaid, all Food and Drug Administration (FDA) drugs would be covered, not just those currently covered under RIPAE. Seniors would likely pay small co-payments, probably less than $ 10, rather than the 40 percent co-payments currently charged.

At this hearing, testimony was gathered on two other Fogarty legislative proposals that would make prescription drugs  more affordable to seniors and persons with disabilities who are not covered by the waiver. One bill (H 7290) would allow seniors enrolled in the RIPAE – approximately 5,000 seniors – to buy prescription drugs not currently covered by RIPAE at the discounted state price.

The second (H 7524) would allow 4,300 low-income persons on Social Security Disability Income (SSDI) who are between ages 55 and 65 to become members of RIPAE and purchase prescription medications at the state discounted rate.

Under both of these legislative proposals, the state would be able to obtain the manufacturer’s rebate available through RIPAE. Rebate funds gained from drug purchases by persons in the new SSDI part of RIPAE would accrue in a special fund to be used to subsidized the cost of these drugs in the future. This legislative initiative, like the other two, would be of no cost to the state.

There’s a very good reason why these proposals should be enacted, says Fogarty, who chairs the state’s Long-Term Care Coordinating Council. “Far too many of our seniors still face great burdens in paying for their medications. If your income is less than $ 10,000 per year – which is the median income for a person on RIPAE – having to pay $ 1,000 or more out of pocket for one’s prescription is a big problem.

“This year, in spite of our budget woes, we have a tremendous opportunity to greatly expand our prescription assistance program for seniors and persons with disabilities. By taking advantage of federal Medicaid dollars, we can save seniors millions and we can do these expansions with no added costs to the state,” Fogarty adds.

Susan Sweet, who represents CHOICES, a home and community advocacy agency and the Rhode Island Minority Elderly Task Force, says the expansion of RIPAE is critical, especially in light of the federal government’s failure to create a federal Medicare pharmaceutical benefit.

“Being able to pay for prescriptions avoids sickness, unnecessary hospitalizations and admissions to nursing homes, saving millions of dollars and many years of productive lives for seniors,” says Sweet. “Pharmaceutical products are the current and future medical miracles, and health insurance is inadequate without adequate drug cover, she says.

Shirley Kaiser, president of the Rhode Island Gray Panthers, whose group has battled years for putting the brakes on rising pharmaceutical costs, says seniors are giddy with the news that Rhode Island may finally move to addressing the problem.

The Gray Panthers strongly endorse the legislative proposals, and she believes this is the year for enactment of a legislative remedy.

At the Rhode Island General Assembly, some bills are enacted while many die during the legislative process, even those with great merit.

In light of the state’s fiscal uncertainties, lawmakers now have a rare opportunity to assist older Rhode Islanders and persons with disabilities in obtaining affordable prescription drugs at no cost to the state coffers.

With the widespread support and endorsement of these legislative proposals from state officials, aging and disability advocacy groups, and the pharmaceutical industry, for me it’s a no brainer – pass these bills and quickly sign them into law, says Kaiser.

It is now time to put this longtime aging issue behind us and move forward to other pressing matters like creating and paying for a seamless long-term care system.

Ensure passage of the three bills by telling your representatives and senators how important these three proposals are for you, and request their passage.