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Issue 6
November, 2001



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Confessions of a cash cow
Why should an agency get rich running my life?

By Laura Hershey

How much personal assistance should someone be entitled to if she needs help with everything from bathing to breathing?

As a person with very significant disabilities -- including mobility impairment, respiratory complications and swallowing difficulties -- I'm what's called a "high-end user" of attendant services. In a progressive state like Massachusetts, I'd probably be authorized 24-hour services, and I'd get to manage the money and the services. But in Colorado, where I live, "high-end" means only 10 hours a day.

November is "National Family Caregiver Month." But what does the "caregivers' movement" have to say about the people receiving the care? Very little, it turns out. Read article.

More about Colorado's program

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I know a few other adult Coloradans even more disabled than me, and 10 hours is their limit too.

Why? You might assume that the problem is a lack of money. Wrong. The problem is where the money goes: It pours into the coffers of a home health agency -- which is presumed to be able to run my life better than I could. Medicaid pays this agency to provide my services -- even though I recruit, hire, train, schedule, supervise and, if necessary, fire my own attendants.

I insist on taking on those responsibilities myself, for all kinds of reasons: I want to decide who comes into my house, who I spend time with, who sees me naked. I want my attendants to know they're accountable to me, not to some nurse sitting in an office somewhere. I want my schedule to accommodate my work and social life, whereas an agency's priorities are to provide coverage, whenever possible, for dozens or hundreds of clients. And besides, from watching my friends deal with agencies -- whether large national corporations, small independent companies or nonprofit independent living centers -- I have learned that agencies just don't do a very good job. They keep unreliable workers, even after repeated lateness or no-shows. They tolerate, or maybe encourage, patronizing attitudes toward people with disabilities. They screw up their complicated schedules, leaving people wondering if and when their aide will come.

Although I do all the work involved in managing my attendants, this agency is still their official employer. Under Colorado Medicaid's home health program, the agency bills the state the maximum reimbursement rate of $227 per day for "serving" me. (This is the same amount allocated for nursing home residents.) My attendants -- the people who actually do the work -- earn $11.75 an hour -- less than what many Colorado nursing home aides earn -- and they get no benefits except what's required by law: workers' compensation and FICA matching. These hard-working individuals, who must be skilled and reliable, get no health insurance, no vacation time, no sick leave, no overtime pay.

Do the math: That wage, together with the FICA and workers' comp, probably costs the agency about $13.50 per hour. I get 10 hours of service a day, for a total labor cost of $135. That means the agency is netting around $92 per day just for calling me its client.

Sure, the agency has to cover some other direct service costs out of that. Someone has to process my attendants' timesheets once a week, and cut their paychecks. And every 60 days, Medicaid requires the agency to send a registered nurse to bother me for a few minutes. But that's it.

Unless I'm missing something, it seems to me that all of this means that over the course of a year, I'm good for a profit margin of around $32,000 to this home health agency -- which, in its own words, is "one of North America's largest and fastest growing healthcare companies." (This company, boasts its website, "is located in most major cities across the nation and employs over 15,000 caregivers.")

I'm doing my part to feed this corporation's growth. With the $32,000 they rake in from my "case," they can hire a mid-level manager to help keep track of all that money.

I'm not a "client." I'm not a "consumer." I'm a cash cow.

(By the way, I'm not using the agency's name in this article, for a very good reason: I don't want to be "dumped." Despite the lucrative business, Colorado has few Medicaid home health agencies willing to take on "heavy care clients." I know several disabled people who have been dropped by agencies after filing complaints, or otherwise pissing them off. Some have been blackballed, ending up unable to find any agency willing to take them on.)

If I compare Colorado's attendant service program to other programs across the U.S., I guess I'm relatively lucky. Some states don't offer any in-home services. I have friends and acquaintances who've moved here from Tennessee and other states where their only option would have been a nursing home. Colorado's Medicaid program provides me with almost enough assistance to stay out of a nursing home. It puts me in a position of perpetual, precarious balance, which I can only maintain by paying out-of-pocket for extra assistance, and by relying on lots of unpaid help from my partner.

Considering the amount of Medicaid money earmarked for my services, I should be able to do a lot better. Give me that $227 a day, get the nurses and bureaucrats out of my way, and I could get all the help I need right now. I could give my attendants raises, and offer some benefits, and increase my own hours. Plus, I'd have the added bonus of being able to consider all applicants, based on my own ideas about what qualifies someone to do what I need done. I wouldn't have to restrict my interviews to people who have taken the irrelevant, institutionally-biased training to become a "certified nurse's aide."

A few Coloradans will soon have some of those options. A new consumer-directed attendant program will begin some time within the next year. It will allow a handful of personal assistance users -- just 150 -- to hire, train, and supervise their own attendants. If I'm lucky, I'll get picked in the lottery to become a participant in this pilot program. Then I'll be able to do what I've been doing -- with less interference from medical professionals, and none from agency staffs.

Colorado's new program is part of a revived interest among a number of states and at the federal level in consumer-controlled attendant services. The idea itself is not new. A few states have allowed various degrees of client direction for years. A 1994 study by the World Institute on Disability analyzed almost two dozen local programs which paid "independent providers" of attendant services. Guess what? The WID study found that these programs tended to be more supportive of disabled people's independence and cost less than programs using agency providers.

In Colorado, this innovation originally occurred as a result of fiscal concerns, but it's been guided all along by disability-rights advocates. Four years ago, the state legislature created an ad hoc Medicaid Reform Committee (This happens every few years, when state lawmakers start to worry about increases in Medicaid spending -- in the early '90s, a committee like this one had voted to pull Colorado out of the Medicaid program entirely -- a proposal which, fortunately, was vetoed by then-Governor Roy Romer.)

In 1997, Julie Reiskin, executive director of the Colorado Cross-Disability Coalition, testified before the committee about the waste involved in allowing agencies unnecessary control over personal assistance services. Some people with disabilities, she said, could and wanted to manage their own services.

A moderate Republican, Sen. Dottie Wham, took that concept and "ran with it," Reiskin recalls. Wham liked the idea of saving the state some money, but Reiskin thinks the idea of allowing disabled people more independence drove Wham's sponsorship of the bill which created this program.

Consumer-directed attendant programs are essential to disabled people's liberation. In advocating for such programs, we may find natural allies among fiscal conservatives. But beware: Some conservatives support so-called "consumer-directed" programs for all the wrong reasons.

In early June, I attended the National Symposium on Consumer Choice in Washington D.C. Sponsored by the U.S. Department of Health and Human Services, it drew several hundred participants and featured a wide range of speakers and panels. The ideas expressed fell into two distinct categories. Some advocates spoke out -- as I am doing here -- about the poor service and the oppression inherent in the agency-controlled model of service delivery; and about the need to have more genuine control over our lives by having real control over our services. But unfortunately, the dominant point of view was that service delivery should be put into the hands of family members, who "care more" about the person with a disability than an agency does.

While I agree that people with disabilities should have the option of hiring family members, or anyone else we choose, I am critical of much of the rhetoric I heard at this symposium. I'm concerned that the Bush Administration and Republican-controlled states may be embracing the idea of "consumer direction" as a money-saving tactic -- trusting that if family members (especially women) "care more," then they'll be willing to work for peanuts.

The independent living movement and the U.S. Supreme Court's 1999 Olmstead mandate are slowly forging alternatives to institutionalization for people who need personal assistance. Our movement has rightly targeted institutional corporations as our primary adversaries: We'd rather go to jail than go to a nursing home.

But in our quest for independence and equality, we must also confront and abolish the obstacles imposed by in-home services as they are currently delivered to most people -- namely, agency greed and medical-model restrictions. Olmstead planning everywhere should include attention to these obstacles, and the crafting of creative, non-agency-based service models.

Consumer-directed attendant programs can enable disabled people to hire and schedule according to their own needs and desires, and to get on with our lives. For that reason, such programs have been popular with independent living advocates for years. The other advantage, the promise of saving money, has recently come to the attention of cost-conscious politicians.

Underpaid family "caregivers" are not an acceptable alternative. Yet even some consumer-direction proponents focus on giving power to family members rather than to the people using the services. The idea that families are always appropriate service providers is a dangerous assumption. We know that many people with disabilities suffer abuse and violence at the hands of their family members.

Colorado's program, though still tiny, might become an excellent model for other states trying to transition from agency-controlled services to consumer-directed options. The program will save money, but not at the cost of hours or quality of service, nor of real choice in selecting workers. Each consumer will be able to determine how to spend the same funds previously controlled by an agency. The consumer may increase her own hours, and/or increase his attendant's wages, as long as the consumer stays within the same budget.

If the consumer is reasonably frugal, and manages to buy all needed services for less than what the agency had spent, the leftover funds will be split: Half will go back to the state -- making cost-conscious politicians happy -- and half will go into an account which the consumer can save for a future purchase to promote independence -- making advocates happy.

Some nondisabled advocates in Colorado are insisting that the program can only work for "young adults with physical disabilities," says Reiskin. But she believes -- and I agree -- that other personal assistance users could and should benefit from independent management opportunities. With some support, people with cognitive or mental impairments, and older people, could control their own services too.

That idea's time may come, but it isn't here yet. In February, U. S. Health and Human Services Secretary Tommy G. Thompson announced $113 million in grants aimed at "helping family members provide care for the elderly at home." States receiving these grants will, according to a story from the Associated Press, "use the money to run programs that help family members remain caregivers. They would provide, for example, information and assistance, training, counseling and support, and respite opportunities." HHS bragged that this initiative was "the largest new support program under the Older Americans Act since 1972."

In the wake of the Olmstead decision, policymaking related to support for older people may be making some progress, by inching away from institutional "care." But if family "care" is the only alternative our government leaders can envision -- with no attention to self-directed attendant services -- then choice is still an illusion for many people, particularly those without family members available, willing or able to become their primary service providers.

These issues are more urgent now than ever. We are still waiting to learn exactly how the Bush Administration will respond to the terrorist attacks of September 11. Some of the possible responses -- including a multi-pronged, lengthy war -- could turn out to be extraordinarily expensive. Eventually, funds could be diverted away from Medicaid programs to feed an increasingly ravenous military machine.

I hope the disability community will advocate against full-scale military adventures and the austerity measures that such a scenario would necessitate. If that scenario does come to pass, we will have to work harder than ever to influence Medicare/Medicaid spending priorities. We'll have to make clear that home health programs exist not for the benefit of nursing home corporations, home health agencies, nor even our family members -- but for us.

Laura Hershey is a freelance writer and disability activist living in Colorado.

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