By Marilyn Hammond

Personal assistance services are the essential link in maintaining your independence and freedom, but they sure can be a can of worms. Your service agency makes rules for its convenience, not yours, or sends you someone new and green every other day. Your attendants get sick when the weather is nice, think they should run the show or can't get along with your dog.

You're not alone. Other people have faced these problems, and come up with creative solutions.

True Crimes

Agencies that provide personal assistance services often have their own regulations. For example, some agencies won't let assistants work later than 9 p.m., including weekends. For Melissa Smith, a quadriplegic from Illinois, this rule inhibits her freedom to date or go out to dinner with a friend. Smith is not willing to forgo her social life, so she fudges. After establishing a good relationship, she asks her assistant to change the paperwork. The assistant works the same number of hours but with more flexibility, writing down 9 p.m. but coming in later. Or someone else puts her to bed and Melissa trades the hours for a later date. She compensates assistants for their flexibility in small ways such as taking them out to lunch.

Dan Simpson, a quad from New Hampshire, concurs that altering paperwork can sometimes be the best solution. "Far be it for me to suggest such a thing," he says, "but why tell the home health agency exactly what you will be doing evenings or weekends? There is enough control in our lives as it is. A little white lie can do wonders for one's social life."

The Readers Always Write We asked for tips. As usual, you responded. Managing Money To prevent problems, I carry a minimal amount of cash, especially since I'm often out by myself and need a stranger's assistance to help me purchase items. I use credit cards or ATM cards where possible, and checks to pay employees. I keep my wallet and checkbook in my wheelchair pouch. I also charge my chair in my bedroom at night, something I learned to do when my wallet was stolen out of my chair while it was charging in the living room. I have my bank statements and other financial documents mailed to my office and keep them there. I also use a number-key access code to my house instead of giving keys to assistants. The code can be easily changed when somebody quits or is discharged. Gordon Palmer Tallahassee, Fla. When An Attendant Quits Don't take a resignation personally. Accept that this is a person whose time has come to move on. Start recruiting immediately. If you can get a new attendant before the old one leaves, you have help for training and orientation. Offer a reference for your former attendant and keep in touch. Former attendants make great friends. Nancy D. Crowther Austin, Texas Keeping Your PCA To retain PCAs, I try not to ask one person to do too much. For example, I have one person who just wants to work Monday through Friday mornings so I hire somebody else to do weekend mornings and somebody else for nights. Although the weekday PCA has filled in at other times, he has been working for me now for almost five years. This method results in more employees, but has advantages. More people are more likely to notice more things, such as a pressure sore developing or an overlooked detail. When somebody quits without notice or you have to fire somebody, you're not stranded. Gordon Palmer Dumping Your PCA When you hire a PCA, provide cable TV in their room but keep the cable account in your name. Then if they begin sitting around too much or claiming squatters rights though you have suggested they would be happier elsewhere--then you sorta suddenly don't have the money to pay the cable bill or for some other reason it gets turned off. (You've called the cable company and told them exactly why you want it off for a few days.) The stress of facing life without TV is more than most can handle and even the ones without friends, without money, without a car, find a way to go elsewhere. Name withheld on request My Job/Your Job I have worked as an attendant for 18 years. What keeps me going are mutually respectful, mutually supportive relationships with each of the people I work for. This is my part: * To recognize each individual as a human being, not as a patient or a case * To acknowledge their strengths and needs, not judging them * To respect their personal space, and of course their personal property * To remain fully available, both physically and mentally, during work shifts * No Pity! In turn, I expect my employers: * To recognize me as a human being, not as a servant * To acknowledge my strengths and needs, not judging me * To respect my personal life, both by asking questions and by knowing when not to * To express appreciation for my work. Hannah Joyce Berkeley, California

Who's the Boss?

Ken Pratt, a quadriplegic from Utah, believes in establishing control from the beginning. "They are going to tell you what they want," he says, "unless you tell them what you want. With a new agency, you need to be assertive. Be up-front about what your needs are, otherwise they will assess them for you. However, you can't be so demanding you are unreasonable. You have to look at it from both sides."

Mary Beth Bohan, director of the Transitional Living Center in Salt Lake City, suggests a slightly different approach. "The deal with a nursing service is bizarre because they work for you, but both parties feel like they are in control," she says. "This can set up a power struggle. It's important to be really clear about what your needs are. The communication is critical, at least at the beginning of the relationship, and then if things aren't going well, get more assertive."

Teresa Carroll, a quadriplegic from New York, combines assertiveness with meticulous documentation. "The documentation proves or outlines how problems add up," she says, "and it's easier for the agency to track down problems." One of those problems was coping with 49 different assistants in two months, so she took her documentation to the agency chairman. She asked to orient all assistants before they were assigned to her. The agency agreed, and also compiled a list of people familiar with her care.

Pratt confronts his agency when the turnover gets out of hand. "Some home health agencies want to rotate people," he notes. "It's much better for one person to establish a routine. When they rotate people, I call and say 'No, I would prefer it this way.' I start my day at 5 a.m. That has made it hard to get people, but I insist. If they say no, I start pushing the other way. I say, 'Then how about 4:30 or 4:00?' When I start to push that way, they usually find somebody to come."

Jim Mowrey, a quad from California, feels exceedingly lucky to have kept the same attendant for seven years. "I wish I could tell some magical story," he says, "but it has at least as much to do with my attendant, who is tolerant and understanding. One piece of advice is get to know your attendant and what is important to him or her. My attendant has a thing about being respected. So I always give him time off for his family, I pay him as well as possible and I treat him like a friend. It is almost like a marriage in that you just have to respect each other. Although I say it facetiously, I often remark that it would be as hard on me if Raymond left as if my wife did!"

Self-Hiring

The best solution for Martha Griswold, who has spina bifida and lives in California, is to hire her own assistants. She screens applicants by telephone, and doesn't humor the ones who tell her they just love to take care of old people. "I am the type of person that doesn't want to be loved by total strangers," she says. "My way of looking at it is that I have work that needs to be done. It's better to find someone who needs the money as much as I need the help, rather than someone who wants to be an attendant to feel good about themselves."

Simpson agrees. "Don't rely on someone who will do attendant work for free," he says. "They may help you for awhile but they soon tire of this and move on to 'help' someone else. They do this because it makes them feel good, not because you need the help. It is much better to hire someone who really needs the money. They are less likely to leave you stranded."

Like Griswold, Simpson prefers to hire his own assistants. "I also use an agency but I have an agreement with them that I will find my own attendants," he says. "I advertise for and interview prospective attendants. If I'm happy with them, I send them to the agency, which hires them. I get to pick who I want rather than rely on whoever an agency might send."

Live-in Care

Ken Kurtz, a quad from Utah, married one of the first assistants he met in rehab. "It's a terrific situation," he says. "She took great care of me in the hospital. She takes great care of me now." They have been married seven years and still get along well, although the beginning was a little awkward. "On one hand I wanted to have a relationship, but I felt like I was bossing her around. Once I realized she was fine with it, it didn't bother me any more. One of the things I strive for is to separate the two roles. I always say 'please' and 'thanks' and try to respect her time. There are situations where people have been married and it gets to be too demanding. Every day I remind myself she needs her space too. My wife helps in the morning and evening, but she is free to do what she wants during the day. It's the ideal situation." Kurtz knows four other people who married their assistants.

Lex Frieden, a high quad from Texas, is also married and has a live-in assistant, but it isn't his wife. Frieden, his wife and 7-year-old grandson share their home with Mac, a longtime friend. Mac has short-term memory problems from a brain injury he received in Vietnam. He serves as Frieden's personal assistant while Frieden helps him organize his day. "It's not as simple as it sounds," Frieden admits. "Lots of people say to me, 'Gee this is a perfect solution,' but there are challenges. It is difficult to live 24 hours a day with someone who has physical impairments and it's difficult to live 24 hours a day with someone who has a brain injury. However, it can work."

Conflict Resolution

Griswold's assistant has been with her for three years. "People just have different styles of doing things," she says. "It's amazing how you can get so annoyed at one another over little things. Sometimes we blow up at one another. She threatens to walk out. Then I say 'Sandy, I really need you. You do a good job. Let's think about this before we do anything rash.' Usually in a couple of hours we have gotten over it. Maybe we do people a disservice to think that any more than marriage is happily every after, that a person and their aide are going to live happily ever after."

Pratt believes in being vocal, positive and directive. "I come from that side of the block, that part of the world, probably too much testosterone," he says. "You need to give directions, otherwise they will hold up the wall. What I hear is everybody wants to do me, because I have a positive attitude, I'm not mean and they know what to expect. Attitude is so key to whether you are going to get along with your attendant. I have an attitude of gratitude for what I have, I stay focused and I learn from the bad things."

For Simpson, one of the most difficult aspects of using personal assistance services is having to fire someone. Luckily, he has only had to fire one person. "She had just started, but the first three days she overslept every day," he recalls. "Generally if I am not happy, I just phase them out. Maybe it's cowardly, but I find it's easier to cut back on their hours until they move on."

Kurtz advises waiting until the work is done before airing grievances. "The last thing I want to do is have somebody walk out on me. At least wait until the shift is over until you make them mad, so they don't leave you lying there on the floor."

Emergency Backup

People getting left on the floor or sitting in a chair all night are not a novelty to Bohan. "Sometimes people end up really isolated because of their situation and disability," she says. "There was a situation where the nursing service did not put a person to bed, so he sat up all night in his chair. It was obvious neglect and real dangerous in terms of skin breakdown. Everyone needs emergency backup, negotiated ahead of time, to come help in that kind of situation."

Griswold advises exploring a number of different emergency strategies. "The important thing is to have a backup plan," she says. "It could be a neighbor or someone who lives right there in your block. Sometimes you can find someone from your church. Family members, friends or relatives may also be willing to help out."

Carroll informally uses the local police as a backup. Their relationship started after her home health agency informed her they would not give her service dog medication. Carroll went to a neighborhood barn, where she was obviously distraught. Some mounted policemen there inquired why she was crying. When she told them the reason, they volunteered to come over and administer the ear drops her dog needed. They also wash her dog and deliver dog food when she runs out. She knows she can call them in an emergency when her chair breaks down. Carroll designed their web site to pay them back for their assistance.

When Smith needs extra or emergency help, she hires agency assistants on their own time at a lesser rate. Kurtz hires people for backup after they quit the agency he uses. Simpson relies on a number of people, so there are several choices in an emergency. "When you are relying on someone to do your total care you need to have backup," he says. "I try to have at least four or five people working for me so they can cover if someone doesn't show."

A Terrible Tradeoff

Attendant abuse, sadly, is not infrequent. When it occurs, the first step is to tell someone, a measure few people find easy. "When people are intimidated, it's hard to get them to be forthcoming," says Charlotte Handricks, an independent living specialist from Salt Lake City. "Like battered wives, they are afraid of the consequences at home if they speak out." Handricks advises immediate action to remove the assistant--or yourself--from the situation. "Take advantage of Adult Protective Services. Involve the law, even if it's family. If you don't take strong action, you are likely to be subjected to more of the same."

There may be shelters in your area that can provide protection for people with disabilities. If not, there are ways to advocate to put those services in place, which is what Bohan did. "One of the things that is really scary for people is that they will end up in a nursing home or with no way to get care," she says. "If they report abuse and then end up in a dependent situation, it's a terrible tradeoff." As a countermeasure, Bohan talked a local private nonprofit nursing service into donating hours of care to the shelter for battered women. Bohan believes services should be in place in every community. "People don't have to put up with abuse. If local shelters are not providing personal assistance services, work together with disability organizations to advocate for shelters to provide them. It's very doable." She adds that grant money may be available.

Mutual Support

Hannah Joyce has worked as an attendant for 18 years and advocates lobbying for rights. "What keeps me going are mutually respectful, mutually supportive relationships. The element too often missing is respect. When people with disabilities are denied basic rights, such as a choice in service delivery, and attendants are paid poverty wages with no benefits, our government is telling us we are worthless. We must move forward together, fighting for each others' rights. We all benefit by each other's gains. Advocating together enables us to see each other more humanely and increases our mutual respect, as well as being more effective when lobbying."

Besides advocating for basic rights, the way you deal with your assistants and agencies is influenced by your frame of mind. "Attitude determines how people perceive you, how you communicate your needs, and whether you are happy," summarizes Pratt.

Using personal assistance services will never be easy, but neither should it be a constant hassle. Ingenuity, understanding and assertive management can go a long way toward smoothing the way.

Marilyn Hammond, Ph.D., is an instructional design specialist at the Center for Persons with Disabilities, Utah State University.

PAS Resources Hiring attendants may be one of the most demanding and intimidating aspects of owning a disability, but it doesn't have be done in a vacuum. Here are four excellent books--and another pending--that should save you from reinventing the wheel. All offer advice on the basic steps of recruiting, screening, interviewing and paying attendants; employer/employee responsibilities, assertive communication and conflict resolution; and sample forms and checklists for needs assessment, job descriptions, contracts, schedules and tax withholding. Since books are cheap and attendants are not, it may make sense to digest the vast experience crystallized by more than one of these books before entering the deep water of hiring your own attendants. Avoiding Attendants from Hell: A Practical Guide to Finding, Hiring and Keeping Personal Care Attendants, by June Price This is a shoot-from-the-hip, tell-it-like-it-is primer on everything that's good, bad and ugly about personal assistance services--a successful combination of true grit, inside information and edgy humor. Available in spiral bound or trade paperback for $16.95 from Science & Humanities Press, P.O. Box 7151, Chesterfield, MO 63006; 314/ 394-4950; e-mail: publisher@sciencehumanitiespress.com Personal Assistance Services Guide: A Guide for Hiring, Management and Conflict Resolution, by Marilyn Hammond, Ila Marie Goodey et al. This more academic--yet never distant--entry is a well-organized, researched and documented summary of everything you need to know about attendant care. Very strong on detail and common sense. Perfect bound, available for $14.95 from Outreach Division, Center for Persons with Disabilities, 6845 Old Main Hill, Logan, UT 84322; 435/797-2044. Getting From Here to There: A Manual on Personal Assistance, by Catherine D. Ludlum Not slick, but unmistakably the voice of years of personal experience, here's a practical guide that includes an especially good section on taxes and withholding, including samples of government forms. Available for $10 from Personal Assistance Manual, A.J. Pappanikou Center, UCONN, 249 Glenbrook Rd., U-64, Storrs, CT 06269-2064. Optimum Independence Through Self-Managed Attendant Care: A Guide for Both Persons with Disabilities and Professional Case Managers, by Michael E. Shatto. Don't look here for fine words and advice so much as meticulously detailed lists, lists and more lists for self-assessment, hiring, documenting, withholding, all the things that add up to your job as employer. Perfect bound, available for $29.95 plus $5 shipping from Michael E. Shatto & Associates Inc., 25305 Darnoch St., Sorrento, FL 32776; 352/383-0383. And coming next winter: Caregivers and Personal Assistants--How to Manage the People Who Help You, by Alfred H. DeGraff DeGraff was writing on this subject when nobody else was, and the first two editions of this book were groundbreaking. To be included in an announcement mailing for the third edition, contact Saratoga Access Publications, P.O. Box 1427, Fort Collins, CO 80522; 800/474-4010 or 970/484-4010; e-mail: caregiver@saratogapublications.com

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