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“Give me a fish
and I eat for a day,
Teach me to fish
and I eat for a lifetime!”
—author unknown*
* While this quotation appears too frequently in some literature, it well expresses the spirit behind learning as many independent living skills as possible, and minimizing one’s dependence on others.
For the ‘60s Generation, it was the Summer of Love. The morning of July 4, 1967 was hot and muggy. I was 18 years old and had graduated from a parochial high school just a few days before. Instead of hanging with hippies in the Haight or educating America’s political conscience in Berkeley, I was working for the summer on the east coast on Martha’s Vineyard, Massachusetts.
The Vineyard is that well-known resort island about seven miles southeast of Cape Cod. As any island, it is surrounded by beautiful ocean beaches.
That 4th of July was a holiday for me from my clerking in a clothing store, and in the early morning I sprang out of bed and pulled on my swim trunks. I was in great physical shape and thoroughly enjoyed bicycling the five miles to the Vineyard’s South Beach. I had planned to spend the day tanning, swimming, and boosting my social life.
After an hour of tanning, munching on apples purchased from the local A & P Supermarket, and listening to the AM-radio ‘60s rock of WBZ (Boston) and WABC (Manhattan), it was time to cool off in the Atlantic. Around ten o’clock that morning, I paddled my bare feet through the hot sand and climbed up onto a concrete bunker that nosed out into the crashing, cold surf. Standing tall at the front edge of the bunker, I looked out toward the huge waves rolling toward my toes.
As many of us teenagers had done on previous days, I curled my toes tightly around the front edge of the pier, leaned forward like a cat about to spring toward a mouse, and dove head-first into the bluish-green curl of a huge, incoming wave.
That simple dive would change the rest of my life, and make possible this reference book.
I felt the cold, refreshing splash of salty ocean slap my face as I entered the water—and then I heard a “snap.” Regardless of the large appearance of that wave, I had apparently dived the 15 vertical feet downward into a 5-foot depth of low tide. My forehead hit the sandy ocean floor, my neck snapped at the C-5/6 level, and my body was instantly and painlessly paralyzed below the level of my broken neck.
A surfer saw me floating face-down and before I had used my initial deep breath of air, I was pulled from the water. Still very conscious and cracking jokes as a probable defense against my body’s traumatic state of shock, I was eventually flown by air ambulance to Massachusetts General Hospital in Boston.
As I felt the small plane touch down on the big city runway, I sensed that my new lifestyle had just begun.
My acute care at MGH began with ten and one-half hours of cervical fusion surgery, followed by several weeks of lying prone on a Stryker frame with a 35-pound cervical traction that had been anchored to my skull.
My widowed mother temporarily left her Upstate New York home and moved into a summer sublet among “all those ‘60s hippies” on Boston’s Beacon Hill. With patience only mothers have, her daily stays at my hospital bedside provided a beginning to the essential psychological support that my adjustment required. It was the closest time that my mother and I had or would spend together. Thank you, Mother, I love you.
My medical situation stabilized after two and one-half months, and I was then transferred to the Sunnyview Hospital in Upstate New York for an additional 11 months of rehabilitation.
I was then, and remain, paralyzed below the chest with neither motor control nor sensation. Medically, I am classified a “quadriplegic” or “tetraplegic,” because all four limbs are partially or totally affected. Typical of other “quads,” I have partial use of my wrists and arms but no finger movement.
This situation may sound depressing to able-bodied folks, however I discovered early that I could minimize depression simply by minimizing thoughts about my inabilities. Perhaps when carried to an extreme this is classic denial, however I quickly learned to avoid teasing myself with wanting to do things that were beyond my new set of abilities.
Instead, I learned to concentrate on my abilities, set some realistic goals, and get back on life’s track. The first step was to learn all I could about living as independently as possible from my cabinet of rehabilitation advisors at the hospital.
As it is for so many types of physical disabilities, the objective for my inpatient rehabilitation was not a cure back to able-bodiedness. Instead, it meant receiving authoritative advice from highly trained medical professionals on making the most of the physical abilities remaining from my disability. Surgeons, rehab physicians, nurses, aides, physical and occupational therapists, social workers, and psychologists each had separate areas of expertise for training people with various disabilities in accommodating their limitations. Over the next few months, I tapped these specialists for all the rehab skills they could offer me.
As I progressed through the specialists, I noticed one serious void that no one could address in much detail—even now, over 30 years later.
I realized that most people who have significant physical disabilities will require routine physical assistance from others in order to accomplish daily activities. Some folks will require very little help, while some will need a lot. According to the duration of the disability, the need for help might be temporary or life-long. For me, these activities include the assistance that I need with activities of daily living (ADL), household upkeep, and pursuing goals of education, career, recreation, leisure, and even sex while living life to its fullest.
The state of the art for learning help provider management skills then was much what it is today. There are few health professionals or reference texts that adequately address how help recipients with a disability should best manage the aides who provide that physical assistance. Most “aide/nursing” books in bookstores teach attendants or aides who provide the help in the methods for performing nursing procedures. Others coach loving family caregivers in how to cope with maintaining their own emotional and physical health while providing unending assistance to a family member. In contrast, very few teach the person who receives help in how to manage the quality of that help while working harmoniously with the providers.
If you require help from others, you are—indeed—the owner and president of a lifelong small business. When you find, hire, train, and manage paid aides (aka “personal assistants” or “PAs”), you are operating your own small business. In a similar way, when loving family caregivers provide some or all of your help, your management concerns shift from employment to human relations. Family caregivers are not paid by check, but instead by appreciation. While expressing appreciation, you are also taking special steps to shield them from overwork and burnout.
Unlike your other career or job, if your PA business goes into a slump or you get tired of managing it, you cannot choose to change careers or go out of business. You have no choice with this one. Your dependence on physical help from others is as lifelong and permanent as is your disability. Your PA business must always be a thriving and smashing success.
It is easy to see the parallels between a traditional business and one where you manage PAs. Let’s say you have designed a better mouse trap and want to market it. A brief listing of the steps to launching this small business would include:
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* Identifying and describing your customer
Who will be interested in buying your mouse traps?
* Deciding where to advertise the traps
Which newspapers, magazines, posters, or notices are read by people who have rodent problems?
* Deciding how to advertise
What benefits do “moused” people want from your traps, and how should advertisements be worded to attract customers?
* Planning the step-by-step procedure for responding to customer inquiries
How will you describe how your mouse trap works, how do you suggest that the caller needs a dozen of them, and how do you arrange for the caller to see a demonstration of your trap?
* Making decisions about improving your efficiency
How can the advertising be improved to save money while increasing inquiries, how can your overall procedures be improved to increase sales and do it better next time?
* Developing guidelines on keeping your customers happy
How do you show them appreciation so they will stay with you, buy more mouse traps, and recommend you to future customers?
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It is interesting that these steps can sound so very MBA, business-like, logical, and based in common sense. Now, let’s look at highlights for finding and hiring the PAs whom you routinely use:
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* Identifying and describing your PAs
Who, in your community, will be interested in providing you with assistance?
* Deciding where to advertise your PA positions
Which newspapers, magazines, posters, or notices are read by people who like to help others?
* Deciding how to advertise
What benefits do “helping people“ want from your position, and how should advertisements be worded to attract your future PAs (customers)?
* Planning the step-by-step procedure for responding to customer inquiries
How will you describe the duties of your position, how do you suggest that the caller would enjoy working with you, and how do you arrange for the caller to see a demonstration of your routine while checking applicant references?
* Making decisions about improving your efficiency
How can the advertising be improved to save money while increasing inquiries, and how can your overall procedures be improved to increase successful recruiting (sales) and do it better next time?
* Developing guidelines on keeping your PAs (customers) happy
How do you show them appreciation so they will stay with you, continue to provide you with quality help, and recommend you to future customers?
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See—you do run a business!
If that sounds pretty serious, it is. Since your PA business cannot be allowed to fail, it should be operated as efficiently and cost effectively as possible.
Hospitals and rehab centers have traditionally assumed that their patient will live primarily at home, and that caregiver relatives will be the main source of personal assistance. If not family caregivers, it is assumed that home health aide agencies will provide plenty of employed and well-trained aides. In a third instance, rehab centers hope that their most motivated patients, who want to move away from home and into the public mainstream, will also be sufficiently motivated to figure out for themselves how to directly employ help.
In truth, even today’s most dedicated rehab staff usually lacks the knowledge and resources for adequately teaching comprehensive PA management skills. This situation has traditionally represented a serious void in the educational services they should be providing to their most motivated patients in preparing them for discharge.
The good news is that more and more of today’s more progressive rehab centers are at least providing pamphlets that introduce patients to basic resources for finding help providers. Some of these centers offer occasional lectures that are presented by social workers or experienced help recipients.
Disability-related magazines often offer one or two annual articles that outline common problems encountered by family caregivers and help recipients. In most articles, a series of introductory problem scenarios is somewhat answered by remedies and preventions that have been compiled by interviewing several experienced help recipients. Editorial letters also occasionally appear from readers who want to share a few beneficial PA management tips they have devised. Within the last 10 years, a handful of helpful guidebooks and references have been written by social workers, caregivers, and help recipients. These guides typically address the basics about placing newspaper ads, interviewing applicants, training new PAs, and paying them.
This gradual development of expertise for ADL-dependent people to learn PA management skills is a step in the right direction.
If asked to describe their most depressing nightmare, most people with disabilities would cite their impression—or, indeed, actual experiences—of daily life in a nursing home. The nightmare portrays a daily lifestyle where the quality of one’s personal life is the consequence of a poorly planned, administered, staffed, and budgeted residence situation. The clients' humanitarian needs are neglected—and their optimism and spirit are forsaken—as they regrettably submit to the decisions, schedules, and consequent limitations imposed on them by the institution.
This depressing nightmare is, indeed, reality in many of today’s residential health care facilities. It is common to receive a poor quality of assistance that is provided on an undependable schedule by uncaring or abusive providers. This frequently happens when an incompetent administrative staff half-heartedly hires uncaring providers who do not want to be providing assistance, and should not ethically be doing so.
In order to be active and to maximize independence, you—or a trusted family representative—must be in control of the quality, type, and scheduling of help that you receive. If you are not in control of these factors and working in harmony with the people who provide assistance, then you have lost the freedom to choose your own lifestyle. To lose personal freedom is much worse than merely losing independence—it is losing one’s spirit and soul!
Rehabilitation centers and patients with dependent ADL needs, alike, should be placing the same importance on teaching and learning PA management skills as they now do about other self-care topics. As soon as a patient who is likely to have dependent needs after discharge is identified, the rehab staff should begin both teaching these skills and encouraging the motivation that fuels a person to insist on learning and using them. At this early stage—and not merely during the final days before discharge—the staff should be coaching patients toward being self sufficient in their own PA management. Indeed, some model facilities are selecting patients and making them responsible for recruiting, hiring, training, and managing their own providers while they are still inpatients.
In addition to medical facilities providing this instruction in PA management skills, they should be advocating for changes in the way PA funding is provided. It is now ironically easier to acquire funding for the expensive and less desirable life inside a nursing home, than for the much lower cost of hiring help providers who are used in one’s own home.
When funding is available for using help providers, the source usually stipulates that the providers must be selected, provided, and supervised by an approved health care agency. Funded clients are less frequently permitted to personally employ their own PAs. This requirement of using only agency aides is a significant impediment to help recipients who want to control both who provides them with help as well as the quality of help they receive.
Additionally, as this reference will show, the cost of agency help is usually two or three times the cost of personally employed help!
As you will see throughout this comprehensive reference, management skills are essential regardless of which of the three provider resources are used: family caregivers, agency aides, or personally employed PAs. Even if you use trained, agency aides, it will be you—and not an agency supervisor—who must know and routinely use skills for instructing, supervising, and keeping happy those aides around your unique needs. You—the help recipient—will be instructing, managing, and providing feedback each day to the provider who assists you. It is common that the two of you will seldom see an agency supervisor more than once each month.
If your disability requires you to use help from others, and you want to be as independent and in the public mainstream as possible, then you should have the skills for independently managing those help providers. You should be able to recruit quality help providers—whenever and wherever you need them—and use ongoing management skills to keep them for as long as possible.
Throughout your lifetime, you will be using the RISHTMP Cycle two, three, or more times each year to get the help you need. RISHTMP, a term coined in this book, stands for recruiting, interviewing, screening, hiring, training, managing, and parting ways with the aides you use. As mentioned, routinely implementing this management cycle is perhaps the most important small business skill you should master. You cannot allow your PA business to fail, and efficiently operating it requires as much technical knowledge as does a traditional small business.
For over 30 years now, I have hired and managed the attendants and aides who have helped me. My ability to hire and use help in a wide variety of settings has enabled me to enjoy a life rich in education, careers, and travel—even though I remain 80 percent paralyzed.
The foundation for all of these freedoms has been my ability—and insistence—to manage the people who provide me physical assistance. From over 30 years of experience, there is absolutely no doubt in my mind that if I were to lose control of the quality of assistance I receive—as well as the quality of people who provide that assistance—I would lose control of my lifestyle, quality of health, optimism and spirit, and perhaps my sanity.
I propose that if you are dependent on assistance from others, one of your most important life-sustaining skills is the ability to select and manage your help providers, as well as the quality of their assistance.
This comprehensive, indexed reference will enable you—who uses physical help, or a family caregiver who coordinates it for a loved one—to work in harmony and mutual respect with help providers, while also being in control of the help they provide. Consequently, you can safeguard your personal freedom and be active in your chosen lifestyle.
Thousands of people in many countries have maintained control of their disability, lifestyle, and personal spirit through the management techniques in this book and its previous editions. These strategies have worked for me, for those people, and they should work for you!
Alfred H. “Skip” DeGraff
Author, publisher, wheelchair user, and PA manager
Dedications
This book was made possible, in part, by my experiences with family caregivers and personally employed aides.
To Peggy, my former wife—For over 15 years, you provided me with some of the most responsible and dependable help I have known. You moved out because my need for help had consumed your living space, privacy, personal life, and—indeed—your spirit. Please be assured that your personal pain and sacrifices were neither unnoticed nor forgotten. This reference provides detailed strategies for avoiding caregiver burnout by reserving family members for their unique love, caring, and support. How I wish this book were available 20 years ago when we desperately needed it.
To my personally employed PAs—Throughout these 30-plus years, each of you has taught me something about being a better manager. I have learned from strategies that worked well and from those that failed. I am grateful for the help you gave me and the skills you taught me. If you spot your first name used in this text’s “how to” discussions, know that a skill you taught me is now being shared with thousands of help recipients and providers throughout the world!
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