INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. Independent CHOICES

Arkansas Department of Human Services
December 2000

Arkansas is one of the first states in the nation to offer disabled and elderly Medicaid clients a cash allowance to purchase their own personal care services. Here's how it's being done...

In December 1998, Arkansas became one of the first states in the nation to fundamentally change the ways in which Americans may receive personal care services through Medicaid. The experimental program is called IndependentChoices, and it may be the key to returning personal freedom to millions of people in Arkansas and across the nation.

In most states, Medicaid is unable to give its clients who need personal care services choices regarding how, when, or by whom those services are delivered. But Arkansas (along with Florida and New Jersey) is pioneering a revolutionary alternative: giving a monthly cash allowance to 1,000 of its Medicaid enrollees who want to make their own decisions about their personal care needs.

The cash allowance does more than help people pay for needed services, it gives them back some freedom and independence. Many people are using the cash to hire family members or friends as their personal care assistants. Others are working with IndependentChoices counselors to identify more creative ways to spend their allowance. For example, a blind man used part of his to purchase a washing machine because he was fearful of going to the Laundromat on his own. And an elderly woman who can't cook for herself bought a microwave so she could easily heat already prepared foods.

Of course, IndependentChoices, which is part of the national Cash & Counseling Demonstration Program sponsored by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services, isn't for everyone. The traditional personal care system works well for many people because they are unable to -- or don't want to -- make decisions about their care. But many others want to make their own decisions -- or at least appoint someone else to do it for them -- and in Arkansas they now have that option.

The bottom line is choice -- Arkansas is giving freedom of choice back to people who never willingly gave it up.

 

WHY GIVE PEOPLE MORE CHOICE?

Personal care services involve the basic tasks of daily living such as bathing, dressing, grooming, preparing meals, and housekeeping. This kind of daily assistance often is a requirement for people with disabilities, but also is sometimes necessary for older people, who may be physically unable to do things like cook or get in and out of the bathtub on their own.

Most states contract with home care agencies to deliver services to their Medicaid clients at home. The state pays the agency according to the amount of care each person needs, as determined by an assessment. The client may select a personal care agency, but often has no say in who cares for him or when that care is provided.

Most personal care agencies that contract with Medicaid are able to send aides to their clients' homes only during the workday, and only during the week. This means that their clients must receive care when it is available instead of when they actually need it. For many people who need help getting in and out of bed or getting their meals, this means getting up late in the day, having meals at odd times, going to bed before the sun goes down, and going without services on the weekends.

Even though personal care aides help their clients with intimate personal hygiene activities, they usually are strangers to their clients. And a client usually is unable to choose which of the agency's aides comes to her home.

 

HOW DOES ARKANSAS BENEFIT?

Currently, Arkansas spends 20% of its Medicaid budget to help adults with chronic disabilities get the services they need at home, but many still go without sufficient help. Arkansas is very large but has few cities -- nearly half of its residents live in isolated, rural areas. This creates a difficult challenge for personal care agencies, whose employees must travel long distances between clients' homes. Agencies also are hindered by their inability to hire enough workers -- low unemployment rates have tightened the competition for minimum wage workers like personal care aides.

IndependentChoices is an opportunity to test a new way of helping people in their homes -- a way that may be more flexible, more accessible, and may not cost any more than traditional agency services. And in allowing participants to hire relatives or friends, the program eases the burden on overloaded personal care agencies, which must sometimes place those who contact them for immediate help on a waiting list for services.

 

ARKANSAS' INDEPENDENTCHOICES PROGRAM

  • 2,000 participants will be enrolled in the demonstration program -- half are being randomly assigned to the "treatment' group, which receives the monthly cash allowance, and half to the "control" group, which continues to receive traditional personal care services from an agency.

  • Participants will be enrolled in the experimental program for a minimum of two years.

  • Participants must be 18 years of age or older, already enrolled in Medicaid, and require personal care services. A typical IndependentChoices participant is an elderly, white woman who lives alone in her rural home and has a monthly income of less than $500.

  • The state provides participants with a monthly cash allowance based on the number of hours of personal care that they require each week, as determined by a medical professional. The average monthly allowance is $350.

  • Counselors help participants develop a spending plan. These counselors check in with participants on a monthly basis, and are always available to them by phone.

  • Participants become employers when they hire a personal care aide. Bookkeepers are available to help participants with the paperwork required to pay an employee's wages and withhold taxes.

  • Counseling and bookkeeping services are provided to participants by a single agency. Depending on where they live, participants are assigned to one of the two agencies that contract with the state to provide these services.

  • Participants who can not or do not want to make the decisions regarding how to spend their allowance can rely on a representative decisionmaker -- such as a relative or friend -- to help.

  • The Health Care Financing Administration (HCFA) granted the Arkansas Department of Human Services a demonstration waiver to implement IndependentChoices. HCFA requires IndependentChoices to be "budget neutral," which means it can not cost any more to run the program than it would to have its participants enrolled In traditional services.

Mrs. Lillie Brannon
North Little Rock, Arkansas

When Lillie Brannon was 16, she hitchhiked with her widowed father from her native state of Oklahoma to Arkansas, which has been her home ever since. That was more than 70 years ago. Today, Lillie is 88 and never leaves her home, except to go to the doctor or the hospital. The woman who, at one time or other in her life, worked as a cotton picker, a wood chopper, a peach grader, and a nanny, now can't get around on her own. She can't cook her own meals, can't bathe herself, or get herself into or out of bed. She spends her days in an easy chair in her living room and her nights in bed, assuming she has help moving from one to the other at the beginning and end of each day.

But don't be fooled by Lillie's need for assistance; she still knows how to take care of herself, even if she can't manage it physically. She is every bit as strong-willed and independent as the young girl who took to the road with her dad, which is why she still chooses to live alone in her own apartment. And it's also why she was one of the first people to enroll in IndependentChoices. She likes to tell people: "I've been in four nursing homes, and I've escaped every one of them."

Lillie uses her $662 monthly allowance from IndependentChoices to pay Barbara Ward, a former aide who's become "like a daughter," to visit her daily and help her with getting out of bed, bathing, dressing, preparing meals, and some housekeeping. "Barbara will come any time I call," says Lillie. Barbara averages about six hours a week working for Lillie, but she can only help out in the day time during the week, so Lillie is currently training another personal care aide to assist her around Barbara's schedule. Lillie also pays a family friend to do her grocery shopping once a week and plans to hire her 67-year-old son, David, to help her out a few times a week. And she uses part of her allowance to buy personal care items like facial tissue, bath tissue, and over-the-counter medications.

"I like being able to have a say in who comes here and cares for me," says Lillie. "It's important to get someone -- who's on the ball and can do the job."

The Stoufer Family
Fort Smith, Arkansas

When David and Elva Stoufer got married, they had eight grown children between them. When the youngest of those left home, the Stoufers decided to adopt a child "because life is just more fun with children." But they didn't stop at just one. They adopted three children, each of whom has a disability and must a wheelchair. Michael and Guillermo (or "Memo" as he is called) both have spina bifida, and Lisa was born without arms or legs.

Michael, Memo, and Lisa are all in their early 20s now and -- despite their need for daily personal care -- very independent. All three attend classes at a local junior college and are preparing for careers in the computer field. Michael and Memo play in a wheelchair basketball league. Michael is the funnyman among them ("I'd like to be a stand up comedian, but I can't stand up!"), Memo is quiet and gentle, and Lisa is the honor student, driven to succeed. She has turned her mouth into an asset that makes up for the deficiencies of her body -- she uses it to write, dial the telephone, operate her wheelchair and her computer, and sing. Her singing voice is so lovely that she was invited to perform "Unchained Melody" onstage with The Platters in Branson, Missouri.

"My kids have never asked why God did this to them," says their dad, David.

These are not people who want to live with Mom and Dad for the rest of their lives. But for now, that's what they're doing. AR three are participating in IndependentChoices and they've each hired their mom as their personal care aide. Elva and David have always been the ones to take care of the kids -- even though they both had full-time jobs. Elva worked in a hospital and David was a salesman. IndependentChoices has made it possible for Elva to stay at home with the kids as their full-time employee -- a fact that Michael can't help but tease her about. Every day, Elva helps her three adult children get out of bed, bathe, use the bathroom, and get dressed. She gets their meals for them when they're home and she helps them get to bed at night -- a time-consuming task that is becoming a source of conflict because three 20-something adults usually don't want to go to bed as early as their 60-something mother.

Mr. Scott Ross
Little Rock, Arkansas

Scott Ross is a 42-year-old man who can take care of himself. Of course that's not unusual, but Scott also has physical disabilities. He is blind -- his blue eyes are prostheses. He lost his left leg to amputation and has had a liver transplant. He also has diabetes and heart disease. He needs a little bit of help with some everyday activities, but he'd prefer to hire his own help and make his own choices about who he gives his house key to. These are perfectly reasonable preferences for an independent adult -- preferences that couldn't be accommodated before he enrolled in IndependentChoices.

Scott is appreciative of the flexibility that IndependentChoices offers him. Not only can he hire his own personal care help -- usually friends he trusts -- but he's also been able to use his allowance to make purchases that enhance his ability to live independently. Scott saved part of his allowance to purchase a washing machine for his apartment because he felt vulnerable going to the Laundromat alone at night. He also used his allowance to purchase a bed because he had been sleeping on the floor.

Scott's purchases mean that he has less money left from his $394 monthly allowance to hire his friends to help him with daily personal care activities, but he's found a way to make the money go farther. He used to be employed as a professional massage therapist, so he sometimes barters for his friends' help by trading on his massage skills.

"I feel a lot more comfortable with my friends helping me out," says Scott, who has had some unfortunate experiences with personal care aides taking advantage of his blindness. "It's not good sense for a blind man to hand his keys over to people he doesn't know. And now I can be sure that the things I need to have done are really getting done."

Mrs. Janice Maddox
Pine Bluff, Arkansas

Mrs. Maddox -- whom her loved ones call "Big Momma" -- is 74 years old and requires significant help with her personal care needs. She has diabetes, glaucoma, and has had several major operations and possibly several strokes that have confined her to a wheelchair. She can't do much for herself and must have help getting in and out bed, dressing, bathing, attending to her dietary requirements, taking her medications, and keeping up with the housework. But despite her physical frailty, Mrs. Maddox possesses a tremendous asset: an extensive support network of friends and family that want to help her continue to live independently.

Mrs. Maddox is a widow, but she is surrounded by family. Her many children, grandchildren, great-grandchildren, siblings, and extended family, including neighbors, provide a continual stream of sound and motion for Mrs. Maddox to watch bemusedly from her wheelchair. And when no one is coming or going, the wall of family photos that dominates her living room is a constant presence to keep her company. For five years, Mrs. Maddox received personal care services from aides that were sent to her home by an agency that contracted with Medicaid. Then her daughter read about IndependentChoices in the newspaper. Mrs. Maddox enrolled, but because she isn't comfortable making her own arrangements for care, her oldest daughter, Johnetta Thurman, became her representative decisionmaker.

"There's just something about having family look after her," says Johnetta, who lives in Chicago and travels frequently to Arkansas to make sure her mother's needs are being met. "She doesn't get nearly as many allergic reactions or bed sores now, and I think that's because when it's your own you're looking after, you pay more attention."

Mrs. Maddox' $413 monthly allowance is used to pay her 28-year-old granddaughter, Keisha Long, to spend at least two hours a day, seven days a week attending to Mrs. Maddox' needs. Her allowance is also used to pay her grandson $10 a week to do odd jobs around the house like mow the lawn, make repairs, and bathe Mrs. Maddox' dog, Jazzy J. And the allowance helps pay for over-the-counter medications and toiletries. Johnetta also has put some of the money to more creative use: part of it helped to pay for her mother's new dentures.

 

DOES INDEPENDENTCHOICES WORK?

IndependentChoices is a bold experiment that may change the way personal care services are provided to people who want to direct their own care. it -- along with the other Cash & Counseling demonstrations in Florida and New Jersey -- seeks to answer some fundamental questions about new ways to deliver personal care services at home to people who need them, including:

  1. Can a cash & counseling program meet the personal care needs of both younger and older people with disabilities?

  2. Can such a program also succeed with elderly Medicaid clients who require home-delivered personal care services to live independently

  3. Can a successful cash & counseling program serve as a model that can be transferred to other states?

  4. What are the implications of a successful cash & counseling program for other populations, such as people with disabilities who are privately insured?

In Arkansas, the answer to the first two questions appears to be "yes." IndependentChoices is being regularly evaluated throughout the demonstration period by Mathematica Policy Research, Inc. Preliminary data and anecdotal evidence indicate that participants and their families are very satisfied with IndependentChoices. A more extensive and conclusive evaluation will be completed at the end of the demonstration period in 2002.

Definitive answers to all four questions are still several years away, but Arkansas has taken that first, giant leap forward into the realm of new possibilities -- a leap that may someday restore some measure of personal freedom and independence to millions of Americans.

For More Information:

IndependentChoices, Division of Aging and Adult Services, Arkansas Department of Human Services, PO Box 1437, Slot 1412, Little Rock, AR 72203-1437, (501) 682-2441, www.independentchoices.com

Cash & Counseling Demonstration Program, University of Maryland Center on Aging, 1240 HHP Building, College Park, MD 20742-2611, (301) 405-2548, www.inform.umd.edu/aging

Arkansas' IndependentChoices program is part of the national Cash & Counseling Demonstration Program, which allows Medicaid clients who require personal care services to purchase those services using a cash allowance. Demonstration programs are also underway in Florida and New Jersey.

The national Cash & Counseling Demonstration program is based at the University of Maryland Center on Aging, and is sponsored by:

Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
and
The Robert Wood Johnson Foundation

In addition, the Health Care Financing Administration granted 1115 Research and Demonstration waivers to Arkansas, Florida, and New Jersey to implement cash & counseling programs and provides those states with continuing oversight.

Credits:

Writing: Teri Larson, Burness Communications
Photographs: Kelly Quinn
Design: Jason Salas Design

This brochure available from Arkansas Department of Human Services, Division of Aging and Adult Services, P.O. Box 1437, Slot 1412, Little Rock, AR 72203-1437, Tel: 501-682-2441, Web site: www.independentchoices.com