INDEPENDENT CHOICES
January 4, 2001

An innovative program lets the disabled hire friends and family to care for them at home. The NewsHour Health Unit is funded by a grant from The Henry J. Kaiser Family Foundation.

 

NewsHour Health Spotlight July 26, 1999: A Decade with the ADA Dec. 30, 1999: Enabling the Disabled June 22, 1999: Limiting the ADA April 28, 1999: Defining Disabilities April 28, 1999: Experts discuss the legal issues raised by the ADA. May 1, 1997: The FDR Memorial Browse the NewsHour's coverage of Health issues   Independent Choices Robert Wood Johnson Foundation Self-Determination Program U.S. Department of Health and Human Services The Council for Disability Rights American Association of People with Disabilities Equal Employment Opportunity Commission	SUSAN DENTZER: The last thing Gabriella Anderson expected six years ago was that she'd spend the rest of her life in a wheelchair. GABRIELLA ANDERSON: I was a credit manager, collections manager. I made good money. And something swooped down on me and took it all away. SUSAN DENTZER: That something was a minor car accident involving Anderson, now 38, and her young son, Jesse. GABRIELLA ANDERSON: Okay who's reading to who today. BOY: Uh, me. GABRIELLA ANDERSON: You're reading? SUSAN DENTZER: Neither was injured, but the trauma somehow unleashed a condition that apparently had lain silent in Gabriella's body for years: Multiple sclerosis. That's a disease of nerve cells in the brain and spinal cord that can lead to paralysis and other debilitating symptoms. GABRIELLA ANDERSON: Will it go any colder? MAN: Yeah it will. SUSAN DENTZER: One is intolerance for heat, for which Anderson dons a special cooling vest to get some relief. GABRIELLA ANDERSON: Since then every doctor I've talked to has called me a train wreck. I have lack of concentration, the fatigue is the worst. I can't-- some days I can't even hold up my arms to brush my hair.
	Cash and Counseling
	SUSAN DENTZER: Forced to leave her job as a credit manager for a financial firm, Anderson now draws just $6,000 a year in supplemental security income from the government. She relies on Medicaid to pick up most of her roughly $48,000 a year in medical bills and to pay for so-called "personal care assistance" with eating, bathing and other activities of daily life. Her story is typical of many of the estimated 34 to 43 million Americans with chronic disabilities. Anderson says she's been lucky though, in one respect: She lives in Arkansas, the first of three states-- including Florida and New Jersey-- that are participating in an experiment to give disabled Medicaid beneficiaries more control over their lives. GABRIELLA ANDERSON: I couldn't do anything for myself, I couldn't do anything for my children. Now, with this program, I have help with the things that are hard for me to do. SUSAN DENTZER: Under the program, roughly 850 of Arkansas's Medicaid beneficiaries receive a monthly cash allowance averaging $350. They can use the cash to hire someone to help provide them with personal care, rather than relying on help from a social services agency. The experiment will test whether this approach works well for people with disabilities, without costing any more than is currently being spent on their care. This promotional video describes it. PROMOTIONIONAL VIDEO SPOKESPERSON: Choices that put you in control. If you receive personal care from Medicaid, you may be eligible for a new cash option. SUSAN DENTZER: The experiment is called "Cash and Counseling." It is a joint project of the federal government, the states and the private Robert Wood Johnson Foundation. In its emphasis on empowering the disabled to make choices about their care, the program is a kindred spirit of the Americans with Disabilities Act, signed into law by President George Bush ten years ago. Nancy Ann Min-de Parle recently stepped down as administrator of the Federal Health Care Financing Administration-- that is the agency that oversees the experiment. NANCY-ANN DePARLE: Well, the ADA was really trying to set forth a vision of people with disabilities having more choices, being able to live in the communities and participate fully in community life, and that is what cash and counseling is about as well. It's about giving people the ability-- if they want to-- to be their own boss in a sense, to say, "I want to hire you to, you know, be the one who comes to bathe me or to help me with my needs around the house." SUSAN DENTZER: That's why in Arkansas, the program is called Independent Choices. Program director Sandra Barrett says the underlying concept represents a sharp departure from Medicaid's traditional approach. SANDRA BARRETT: Most Medicaid services in Arkansas are agency provided -- meaning that if you need the service, you select the agency you want to provide the service, and then the agency sends their staff into your home, but not necessarily the exact time you would want the service. SUSAN DENTZER: As a result, says Barrett, disabled people on Medicaid may be faced with an endless parade of strangers arriving to help them with the most intimate tasks. By law and regulation, agency caregivers are also limited in what assistance they can provide. They can't take their disabled clients on outings, or even shopping trips to buy food or medical supplies. By contrast, people who enroll in Independent Choices can escape these bureaucratic constraints. One is 41-year-one year-old Scott Ross, who's blind, has diabetes and heart disease and lost a foot after an accident several years ago. KIM TEAGUE: Well I can tell you this, I braid your hair better than I braid mine. SUSAN DENTZER: Ross has hired Kim Teague, a family friend and local college student, to help him in place of the agency aides he had previously. As with most caregivers in the program, the pay runs about $6 an hour, for roughly 15-hours a week of work. SCOTT ROSS: The people that, you know, came before, they never... Half the time they didn't do nothing. They couldn't take me to the store and I like to do my own shopping. But Kim can take me to the store and she can take me anywhere she wants to.
	Why CBS found the request
	SUSAN DENTZER: The Cash and Counseling program also lets participants spend their allowance on a variety of necessities, like prescription drugs and over-the-counter medication. And participants can even use the money to modify their homes to make them more accessible. That's the "cash" part of the program; then, there's also counseling. The program pairs each participant with a counselor who checks in periodically-- in person and on the phone-- to make certain participants' needs are being met. PERSON ON PHONE: We're calling everyone this month and reminding you, that your personal care worker should take care or help you with your bathing and your dressing. SUSAN DENTZER: Arkansas' Republican Governor, Mike Huckabee, is enthusiastic about the program. He says he personally sent out a letter to the state's 14,000 Medicaid beneficiaries, inviting them to participate. GOV. MIKE HUCKABEE: I think we were pretty amazed that we had a very positive and favorable response from people who wanted to be given that opportunity to make choices. It appeals to me as a Governor, that we've empowered people. That's what government ought to do. It ought not to make decisions for people. It ought to let them make the best decisions they can for themselves. SUSAN DENTZER: But not unlike the ADA, which has provoked more than its share of controversy, Independent Choices also draws fire. Much of the criticism is directed at the way participants go about selecting and hiring their caregivers. SANDRA BARRETT: I would say 90 percent or more of the people have hired somebody they know and the vast majority of those people have hired family members. SUSAN DENTZER: For example, 41-year-old Deborah Branham, who also has MS, hired her daughter, 25-year-old college student Regina Sears. And then there's Gabriella Anderson. After two other caregivers didn't work out, last year she hired her ex-husband and Jesse's father, 51-year-old Noel Anderson. She had divorced him earlier, so that her income would be low enough to qualify for Medicaid and cover those huge medical bills. GABRIELLA ANDERSON: I made the hardest decision that I've every made in my life and I still cry over it. I had to give up my marriage to be able to get help. SUSAN DENTZER: Now, Noel Anderson is paid just over $3,000 a year by Independent Choices to help care for his ex-wife. GABRIELLA ANDERSON: Now can I go outside? SUSAN DENTZER: Meanwhile, a separate state program, designed to help the seriously disabled stay out of nursing homes, pays him another $22,000 a year for her care. But state officials say all of that is still cheaper than the roughly $33,000 a year it would cost to pay for Gabriella's care in a nursing home.
	Paying family members
	EDWARD HAAS: That's not what this country is about, paying families to take care of family. SUSAN DENTZER: Edward Haas is one vocal critic. He heads one of Arkansas's eight area agencies on aging, authorized under federal law to coordinate and deliver services to the elderly. He argues that Independent Choices has created the potential for abuse, precisely because it allows the disabled to hire friends and relatives. He describes the case of one woman in the program who was effectively victimized by her daughter. EDWARD HAAS: Her daughter was getting the check and spending it and not providing the care. And so mamma was going without care and, eventually, Adult Protective Services was called in to rectify the situation. SANDRA BARRETT: We have identified situations where we thought people would better be served by an agency model and we've counseled with them and they have voluntarily returned to agency services. SUSAN DENTZER: Still, Haas argues that the program sends the wrong signal to people who are already taking care of their disabled loved ones without any government assistance. EDWARD HAAS: I think if we're going to take government money and do something, what we ought to be doing, is finding a way to help those families who have been trucking on for many, many years taking care of mamma or grandmother. SUSAN DENTZER: But government officials disagree that it's inappropriate to pay relatives small stipends to help provide care. Bob Williams is a deputy assistant secretary overseeing disability programs at the U.S. Department of Health and Human Services. Williams himself has cerebral palsy and speaks through a speech synthesizer. BOB WILLIAMS: Medicaid already allows most types of relatives to provide paid care and has done so for years. The notion that a spouse or a parent can and should be providing all of this help for free dates back to the poor laws of the 18th and 19th century. We live in a much different day and time, and we should, at the very least, re-examine whether these long-held mores are always appropriate to our own time. SUSAN DENTZER: And perhaps the most vocal defense of the program is offered by participants themselves. GABRIELLA ANDERSON: I know there's going to be people out there that abuse it. It's inevitable. But I hope that it doesn't cause them to drop the program, because this program has been the best thing that's happened to me since I got sick. SUSAN DENTZER: The Arkansas experiment is now likely to run at least through 2003. As in the other two states, the results will be closely evaluated for the impact on people with disabilities, as well as on the state and federal budget.