Ali Karabulut - Spinal Cord Injury (SCI) Pages

 
Caregiving

You’ve lived with someone who is spinal cord injured for some time. Perhaps you’re feeling more tired, more blue, more isolated than you want to. You may find yourself with different priorities than your partner, especially where things like work, children, education or creative expression are concerned. The problem? You’re not disabled, your partner, son or daughter is. Research is showing that wives, husbands, significant others ­ those who provide care ­ are at risk of developing significant problems of their own. If you provide care for your loved one – or if you receive care from one ­ read on …

Research and Caregivers:
 Researchers continue to study the physical consequences of aging with spinal cord injury, but often ignore the other people in the spinal cord injury survivor's life. What happens to those around the survivor as they, too, age? An ongoing research project with long term survivors, sponsored in part by Craig Hospital, recently polled spouses of long-term survivors to learn more about what happens to caregivers and to their relationships over time. The findings reveal predictable areas of concern: emotional issues, role overload, more frequent health problems and changed family dynamics.

In the Craig study, 124 spouses of long-term spinal cord injured persons were surveyed. Ninety percent were women, so keep that in mind as you read through these findings. Their average age was 52 and, on average, they had been married 29 years.
In general, the spouses reported being more depressed, having different priorities, and having their needs less well met than their SCI spouses or partners, according to several questionnaires which measured the depression, stress, needs and priorities each partner reported in his or her life.

And, the nondisabled spouses reported significantly more emotional symptoms of
depression, like crying and feeling blue, than their spinal cord injured spouses. Nondisabled partners also showed more physical signs of depression as well, such as sleeplessness and loss of appetite.

Furthermore, nondisabled spouses had more stress, more nervousness and more feelings of being unable to cope than their disabled partners.

Finally, the SCI survivors and their spouses also had many differences in their priorities. Spouses considered learning, creative expression, self-understanding, work, and material comforts to be less important than their disabled partners did. They rated having children as more important than their disabled partners. They said their needs for having a close relationship with their spouse were less well met than their SCI partners, and their needs to work or help others were lower.

Is it the Caregiving or the Injury?
 But there's more: Those wives and husbands­in this study, mostly wives ­ who had the dual role of spouse and personal care provider reported even more symptoms and problems. They reported more signs of depression ­ loss of appetite, sleeplessness, feeling sad, crying ­ than those not providing care. These caregiving spouses also reported more physical and emotional stress, anger, resentment, fatigue, as well as feeling happy less often than their non-caregiving counterparts.

Results were analyzed in a variety of ways to identify the sources of stress depression and negative emotions. Here's what we found:

  • younger caregivers seemed to have more stress than older ones
  • younger caregivers and caregivers whose partners used condom catheters to manage their bladders had more depression
  • the act of caregiving itself seemed to bring stress, nervousness, and depression with it. In fact, it was the feelings of those who provided personal assistance that accounted for virtually all of the differences between spouses and their disabled partners.

In other words, nondisabled spouses or partners who provide care are at greater risk and more prone to depression, stress and nervousness than those partners and spouses who do not provide.

What Could I Be Doing?
Studies of those who care for individuals with other disabilities have reported similar
findings ­ unmet needs, differences in priorities, fatigue, anger, and depression. In addition, they worry about the future ­ who will provide care when they become too old? Who will take care of them if and when they need help? Because of these similarities, there's reason to believe that what helps spouses of people with other disabilities will also help caregiving spouses of spinal cord injury survivors too. Some of the things that have been found to help are:

maintaining equality within the relationship and finding ways for both partners to make significant and meaningful contributions ­ such as through working, parenting, various household chores or money management

maintaining family support and functioning ­ especially during transition times such as moves, ids leaving home, starting or quitting work ­ by emphasizing the importance of each member to the family, keeping communication open through family meetings and staying in touch with extended family

getting help with those highly confining, restrictive and physically demanding tasks which place caregivers on someone else’s schedule ­ doctor appointments, bathing, bowel programs or getting help in times of greater need, such as when you're ill or need bed rest

having some backup help lined up and available ­relatives, friends, neighbors, Visiting Nurses Assoc., local volunteer organizations ­ before the need actually arises

keeping in touch with friends, having people over or visiting them, going out on your on occasionally ­ to help decrease isolation

joining or starting a caregiver support group ­ not to share war stories, but to share ideas, resources and coping skills

preserving your own health by exercising, eating well, or managing stress, even if these

activities cut into caregiving time

doing what it takes to feel in control ­ making and keeping a schedule, making informed decisions

taking enough time for yourself to know when you need a vacation, a break, a night out or even time to be sick.

Caregiving spouses themselves talk about how important communication is between partners and within the family as a whole. They also talk about something called respite care. This allows caregivers to get away from relentless and potentially overwhelming responsibilities for a day or for several weeks by having skilled care personnel stay in the home, or by having their partner stay in a facility which provides an appropriate level of care. Check with home health care agencies or Independent Living Centers for more information. As one longtime caregiver asks, "How many married couples spend 24 hours a day together ­ every day?"

Your job as a caregiver may feel like it never ends. You may feel as though your caregiving responsibilities are the most important ones you have. You may feel guilty if you occasionally take time to think about yourself. But, your needs are important as well. What's more, by not paying attention to those needs, you place yourself at risk of not being able to provide the level of care you want to provide, especially as you age. If caregiving is important to you, taking care of yourself and staying healthy emotionally, spiritually and physically will help insure that you will be much more able to give your spouse the help he or she needs.

Long Term Caregiver

No one plans on spinal cord injury. “No one” includes you–the spouse, the family, the person who provides care–as well as the survivor. Yet you’ve been there, all this time. And by now you know that there’s not much out there in the way of support for spouses, friends and family. You say you feel neglected?

The Forgotten Person:
 At first, survival was everything. As time went by there were medical complications and quality of life issues to worry about, then the fights for accessibility and equality, for benefits and entitlements. Through it all, you, the caregiver, fought the good fight, stayed in the background, seldom complained. After all it wasn’t you dealing with all the tough physical, emotional and social stuff. Or was it?

Stress:
 Some research has been done on people who give care–whether to a person with spinal cord injury, someone with Alzheimer’s disease or to an elderly relative–and it all points toward stress.
Everybody has stress, but caregivers have more of it. This results in health problems, sleep disorders and all the other effects of stress you read about in the popular press. In one group of caregivers studied–people who had been caring for a family member with quadriplegia for an average of 7 1/2 years–75 percent had higher stress levels than the general population.

More Stress:
 Stress often shows up as burnout, defined as physical and emotional exhaustion. Its
symptoms include diminishing self-esteem, a negative attitude, a loss of concern for others, a loss of focus on your own life. It’s real. It happens.
And since 40 to 45 percent of people with spinal cord injury survivors utilize caregivers, there must be a lot of it going around.

The Roots of Stress:
 If you’re a caregiver experiencing stress, it may help to realize that you’re not alone. When caregivers get together, the same concerns emerge over and over again. They seem to fall into four categories:

Loss of Personal Time & Space: Disability itself never takes a holiday and neither does caregiving. Where do you fit your life into all the things that have to be done for someone else? Your own needs routinely take a back seat to caregiving, child rearing, working and other responsibilities about which there is no choice. And if a new problem comes along, the time to deal with it comes out of your own free time, not out of caregiving time. Research shows that when free time goes down, stress goes up.

Social Isolation: Caregiving does nothing for your social life, and the frustration and fatigue that often go with it can further separate you from the company of others. You may no longer hold down a job and the children may be grown. You feel you can’t leave the house. You may have spent your entire adult life caring for children, parents and/or spouse, and you’re not getting any younger yourself. You miss exposure to friends and family, to entertainment and relaxation, to the occasional novel experience. That’s stressful.

The Quality of the Relationship: Many caregivers complain that they don’t have good two way communication with the person receiving care. In one researcher’s study group, only 60 percent said they got along with their spouses. Many feel they treat their spouses better than their spouses treat them, and others perceive personality changes in their partners–such as a new passivity or loss of interest in child rearing or in the relationship itself. Sex lives sometimes go downhill.

Endless Worry: Caregivers worry that their spouse’s condition will worsen. They worry about their own health. They worry that they can’t continue the level of care they managed when they were younger, yet they also worry that someone else won’t do as good a job–not an unrealistic concern.
They worry about finances. Will providing care, or even a nursing home placement, make the spouse poverty stricken as well? And who, eventually, will care for the caregiver?

Solutions: You may not be able to do anything about the disability, but you can do something about how it impacts your time, energy and quality of life. Nowhere is it written that, simply because you provide care for someone with a disability, you may not have a life of your own.

Recruit Additional Help: If finances permit, give strong consideration to getting some help and dividing the delegated work load between two or more part-time personal assistants. They can share on-duty time, spell each other when time off is essential and significantly reduce stress for you. Don’t put all your eggs in one basket.

Support Groups: Share your feelings. One very successful group was started by a few wives of men with disabilities. Besides providing mutual support, they devoted one of their twice-monthly meetings to a specific topic and invited a speaker–for example, someone to talk about financial planning for long term care.
You might start your own support group–ask for names of other caregivers at independent living programs, rehabilitation centers and your chapter of the National Spinal Cord Injury Association or the Paralyzed Veterans of America. If you’re a computer user, you’ll find dozens of disability-related groups exchanging ideas on on-line services such as Compuserve, Prodigy and America Online.

Improve Your Relationship: Research indicates that the better you feel about your relationship with the person receiving care, the less stress you will have. Talk with him or her. Get counseling. If there is serious conflict, invite a third person–one you both know and trust–to help mediate. The results can be gratifying: spouses with the highest morale generally attribute it to the continuing companionship and good relationship they have with their partners.

Avoid Isolation: Invite people in. Cultivate friendships. Make that family of yours show up once in a while, even if all they do is bring in gossip and fast food once a month. Research shows that people who have more frequent visitors–that’s right, not only high-quality, memorable or long visits, but just frequent ones–report lower stress levels.

Get Out of the House: Go somewhere, anywhere, alone or with friends. Arrange things so the tasks you’re most worried about–bowel care and skin management, perhaps–are done before you leave. Family, neighbors or even paid services can often cover for you, at least for a few hours.

Respite Care: Consider outside help for longer periods. Look for local respite programs that can provide you with an extended break from your usual routine. Try religious organizations–you probably don’t need to be a church member–or ask at area hospitals. Check out elder day care programs–some of them can provide trained caregivers during the day, at their place or yours.

Innovate: You might start a care-swapping program in which several caregivers take turns covering for one another. Or share one attendant that several of you hire. Consider students majoring in health care and related professions, who are often required to do volunteer work. Why not with you?
And your spouse? It’s a jolt to have a stranger providing intimate care, but it’s a jolt that goes away with familiarity. He or she may even welcome the variety, especially if it makes your life more workable.

Get Your Finances in Order: Regardless of how little or how much you have, get some help sorting through insurance policies, retirement programs, social security and other government entitlements to find out what there really is to draw on. Keep in mind that specific benefits and programs change from year to year, so re-check periodically.

The Person Remembered:
You may sometimes feel like the forgotten person, but that’s all the more reason to remember that you have your own needs and goals and life. Finding ways to acknowledge and nurture your personal life will bring new energy and enthusiasm into your life as a partner, friend and caregiver.

 
National Association for Home Care
228 Seventh St SW, Washington, DC 20003
202-547-7424
An association for home care and hospice-related information. Provides information on state associations, publications, legislation, regulations, and advocacy.

MedSupport FSF International
3132 Timberview Dr, Dunedin, FL 34698
813-781-7910
To provide stress-free forums and chat rooms for the disabled and their caregivers by providing information and support on the Internet.

American Disabled for Attendant Programs Today - ADAPT
PO Box 9598, Denver, CO 80209
303-333-6698 or Email: national@adapt.org
A national advocacy group, ADAPT focuses on promoting services in the community instead of warehousing people with disabilities in institutions and nursing homes through community involvement and self-advocacy.

Family Caregiver Alliance
Founded in 1977, the Family Caregiver Alliance (FCA) says it was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Although the diagnoses vary, the families share common challenges: isolation, lack of information, few community resources, and drastic changes in family roles. FCA serves as a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy. Conditions addressed include ALS, MS, Parkinson's Disease, Stroke, TBI, and others. Very extensive online resources including fact sheets on diseases & disorders and caregiving issues, and Resource Lists and Reading Lists.

The Caregiver's Handbook
"This is not a how-to book focused on problems of the ill patient," says the Foreword. "Rather, it offers practical approaches to common caregiver problems. Staying healthy, avoiding depression, remaining active, making friends, enjoying pleasurable activities are an essential part of any human life, including those of caregivers." Although focused on caring for the elderly, many topics in this handbook apply to caregiving in general, including: Common problems, Types of help available, Caring for the caregiver, Types of care provided (Personal care, Nutrition, Medical care management), Emotional and intellectual well-being, and Legal/financial affairs. (From the San Diego County Mental Health Services, San Diego, CA.)
Produced by: Caregiver Education & Support Services
San Diego County Mental Health Services, CA
619-692-8702
Editor: Robert Torres-Stanovik, LCSW
Date: 1990

National Family Caregivers Association (NFCA)
9621 East Bexhill Drive, Kensington, MD 20895-3104
800-896-3650; Fax: 301-942-2302
Email: CAREGIVING@AOL.COM
NFCA is a nonprofit membership organization whose mission is to improve the overall quality of life of America's 18 million family caregivers, regardless of their relationship to the person needing care, or the specific illness or disability being dealt with. NFCA was started to improve the quality of life for all caregivers by providing information, educational materials, and advocacy for their cause. Current services to members include: TAKE CARE! Self Care for the Family Caregiver newsletter; Caregiver to Caregiver Support Network; Speakers Bureau; Cards for Caregivers; a newly published book, The Resourceful Caregiver, which is available in local bookstore or through NFCA; NFCA Caregiver Member Survey Report; and National Family Caregivers Week Celebrations in November.Contact NFCA for cost of membership.

The Common Bonds of Caregiving
This article says the first common bond shared by caregivers is the emotional impact of caregiving.  The second common bond is the inner strength that most of us never knew we had. (From the National Family Caregivers Association.)

Preventing Secondary Medical Complications:
A Guide for Personal Assistants to People With Spinal Cord Injury
An easy-to-read booklet designed to help personal care assistants in working with the person with SCI in his/her daily routines. It gives the PCA instructions for giving proper health care assistance that can help prevent medical complications. Some of the topics: skin, bladder, and bowel care ... range of motion exercises ... respiratory care ... diet ... temperature control ... autonomic dysreflexia ... and heterotopic ossification. A daily schedule/checklist and glossary are provided. 25 pages. Illustrated. In Adobe Acrobat .pdf format. (Developed by the Medical Rehabilitation Research and Training Center in Prevention & Treatment of Secondary Complications of SCI at the University of Alabama in Birmingham.)

Caregiver Spouse
By: Kevin Robinson
A first hand story from New Mobility magazine (Feb, 1998) that presents the issues of a spouse being a caregiver for the individual with SCI.

Caregivers for SCI - SCI InfoSheet 17
PDF Format - or - Text Format
Discusses the effects of caregiver stress on the individuals with SCI as well as the caregiver, a self test for stress and tips for handling stress. 1998. Produced by the RRTC in Secondary Complications in SCI at the University of Alabama at Birmingham, Dept. of P M & R. 1998.

Spinal Cord Injury Caregivers Discussion List:  http://www.delanet.com/~mp317912/scic/index1.htm
It's a forum of caregivers, mostly mothers, fathers, companions, of SCI people. They discuss various things and also link the site to information. Since most of the caregivers can't leave their homes, it's the best way to communicate.

Attendant Care Services- Fact Sheet #7
Arkansas Spinal Cord Commission factsheet that discusses what is attendant care, what it costs and funding for these services. 2 pages. Published 12/90.

Caregivers of Persons with Spinal Cord Injury: A Longitudinal Investigation
by J. Scott Richards, PhD and Richard M Shewchuk, PhD. Research Update Newsletter, September, 1996. Discusses the research on the impact of caregiving over the first year after a spinal cord injury. 4pp. Produced by the RRTC in Secondary Complications in SCI at the University of Alabama at Birmingham, Dept. of P M & R.

Caregivers: Taking Care of Yourself
This is a summary of a presentation given by J. Scott Richards, PhD at the 1995 SCI Research Update Conference for consumers with SCI and their families. Provides updates to information on SCI, from the Pushin' On Newsletter produced by the RRTC in Secondary Complications in SCI at the University of Alabama at Birmingham, Dept. of P M & R

Families of Children/Loved Ones with Disabilities Program
An article in Merrill Lynch Online newsletter that reviews what families who have children or loved ones with a disability need to consider in planning for their financial future.

Family Adjustment to Spinal Cord Injury
Available from: UAB - RRTC in Secondary Complications in SCI
1717 6th Ave S, Rm 529, Birmingham, AL 35233-7330
Date: 1988
This booklet addresses some of the concerns and experiences which the family of a person with SCI may experience. It focuses on some of the initial questions and concerns loved ones may have about the injury and feelings that families experience.
Available in PDF or $2 by mail [Evaluate]

For Better and For Worse: Long Term Caregivers
A pamphlet from Craig Hospital that discusses the stress placed on caregivers and ways to deal with the stress . (1994)

Healthy Living: Relationships
An article from Pushin' On addressing questions family members face on relationships with a spouse who has an SCI(January, 2001).

How to Help Someone Who Uses a Wheelchair Without Hurting Yourself
Date: 1997
Available from: Program Development Associates
5620 Business Ave, Ste B, Cicero, NY 13039
800-543-2119

A Labor of Love: Beating Stress in Long-Term Caregiving
An article from New Mobility magazine for June, 2000. This article by Richard Holicky discusses how caregiving is a most stressful occupation - and offers potential problems & solutions for family caregivers.

Preventing Secondary Medical Complications: A guide for personal assistants to people with spinal cord injury
Available from: UAB - RRTC in Secondary Complications in SCI
619 19th St S, Rm 529, Birmingham, AL 35249-7330
Date: 1992
An easy-to-read booklet designed to help personal care assistants in working with the person with SCI in his/her daily routines. It gives the PCA instructions for giving proper health care assistance that can help prevent medical complications. A daily schedule/checklist is provided. 25 pages.
Available in PDF or $3 by mail [Evaluate]

Problem Solving Interventions for Caregivers and Persons with Spinal Cord Injury
An article from Pushin' On updating results of an ongoing study of the long-term effects of the relationship between persons with SCI and family caregivers.

Project FOCUS
A problem-solving training program for caregivers of patients with spinal cord injury (SCI). We recognize that caregivers play an integral role in assisting their loved ones. In this program, they are able to build on tools that can help them reach their goals.

Developed by: Tim Elliott, PhD and Richard Shewchuk of the University of Alabama at Birmingham Dept. of Physical Medicine and Rehabilitation Funded through a grant with the Centers for Disease Control.

Research Update: Grant Awarded for New Research and Training on Secondary Conditions of Spinal Cord Injury
A review of the forthcoming research to be conducted by this newly funded R&T Center. From Pushin' On Newsletter, Winter, 1999, Vol 17(1), produced by the RRTC on Secondary Conditions of SCI at the University of Alabama at Birmingham, Dept. of P M & R.

The Resourceful Caregiver
Available from: Mostly Lifeline
1-800-667-2968 Date: 1996

Written by family caregivers, for family caregivers. Contains useful information to help family caregivers care for themselves and for their loved ones. Lists resources for respite care, caregiver support organizations, help lines, educational materials, and a home shopping section.

Cost:$12.95

SCI -FYI Resource Guide
Produced By: Santa Clara Valley Medical Center
950 S. Bascom Ave. Suite 2011, San Jose, CA 95128
(408) 295-9896 Ext. 24 or e-mail: TBISCIPROJ@aol.com
1997
The SCI-FYI is a comprehensive resource guide intended for anyone in Santa Clara Valley (and beyond) needing information on services related to spinal cord injury - from the rehab professional looking for services to help a client, to family members searching for programs to assist their loved one, to the individual with a spinal cord injury who wants to improve his or her personal situation. Includes resources on Alcohol/Chemical Dependency Agencies; Assistive Technology; Crisis Intervention; Driving; Durable Medical Equipment; Financial Assistanct; Housing; Independent Living; Legal Services; Parenting; Recreation; and Transportation.

Skin Care: Preventing Pressure Ulcers
Produced by: Diana Young Barhyte, PhD, RN
Available from: PVA Distribution Center
PO Box 753, Waldorf, MD 20604-0753
888-860-7244

This video is specifically for the home setting. It includes individuals with SCI and their caregivers and covers the 6 important aspects in skin care: good nutrition, regular skin inspection, fluid intake, simple exercises, taking medicine, and hints for preventing pressure ulcers.

Social Skills for the 90s - Coping with SCI in Social Situations
Date: 1990
Producer: Shepherd Spinal Center
Clinical Research Dept.
2020 Peachtree Rd, Atlanta, GA 30309
404-355-9772
This video is an overview of social learning theory as it applies after the onset of a disability. Presents situations using assertive behavior in humourous, non-threatening manner. (24 minutes)
Cost: $200 Rental: $45.

Stress Management: Chill Out for Your Health
A summary of a presentation discussing stress management and knowing what your stressors are. From Pushin' On Newsletter, Winter, 1999, Vol 17(1), produced by the RRTC on Secondary Conditions of SCI at the University of Alabama at Birmingham, Dept. of P M & R.

Taking Care of Yourself while Providing Care
By: Craig Hospital
303-789-8202 or Email: HealthResources@craighospital.org
Book reports the latest caregiver research with interventions and comments. Topics Include, stress, relationships, resources.Cost: $5

To Everything There is a Season:
A Guide for Caregivers of Farmers and Ranchers with Disabilities Date: 1997
Producer: Breaking New Ground Resource Center
Purdue University, 1146 ABE Building West Lafayette, IN 47907-1146
800-825-4264 -- Self-contained resource package targeting rural caregivers. They can learn how to achieve and maintain a healthy balance in their own lives while positively impacting their families. Rehab professionals can use this resource to help new caregivers prepare for the stresses associated with caring for individuals with disabilities. Also chronicles the stories of nine families and the changes they encountered as a result of disability.Cost: Resource package inlcudes a 45 minute video, softcover book, and brochure. $75. Can be ordered separately, book ($12), video($65), or brochures (75 cents).

Accepting New Help: SCI & Aging
A pamphlet from RRTC on Aging with SCI at Craig Hospital that discusses the changes in one's independence brought on by a spinal cord injury that require the need for assistance. It covers issues of self-esteem and accepting help after SCI and how this can change as one ages.

Respiratory Care of the Spinal Cord Injured Person
By: J. Marlon Finley, CRTT
Shepherd Spinal Center
2020 Peachtree Rd. N.W., Atlanta, GA 30309
404-350-7727
Date: 1991 - Handout to family and attendants explaining steps to follow in providing respiratory care for persons with spinal cord injury following the patient's first pass from the hospital. Topics include: basic anatomy and physiology, importance of the respiratory system and what to do in case of choking.

Cost: No cost

SCI Video Access - a lending program of information videos
Spinal Cord Injury Network
3911 Princeton Dr, Santa Rosa, CA 95405
1-800-548-2673 or 707-577-8796, Fax - 707-577-0605 - SCI Video Access is a program that loans informational videotapes related to spinal cord injury to individuals with SCI and their families. Videotapes are available on these, and many more, topics: attendant care, wheelchair maintenance, bowel management, autonomic dysreflexia, catherization, FES, syringomyelia, spinal cord injury, neurogenic bladder, wheelchair basketball, skiing, parenting, wheelchair tennis, home modification, exercise tapes, pressure sore prevention. Individuals must first register with SCI Network. Tapes are sent through the mail and must be returned within 10 days (postage is prepaid). Funded by grant from the P V A, Education and Training Foundation.

Personal Care Attendants

Attendant Forum
An article from New Mobility, May, 2001, by June Price that discusses two questions dealing with attendants: "How do I arrange for help when traveling? " and "Needing assistance in taking medications".

Attendants
Summary of a program on SCI Forum, January 6, 1998 by the NW Regional SCI System, University of Washington, presenting tips on hiring an attendant.

Avoiding Attendants from Hell
By: June Price
Available from: Science and Humanities Press
PO Box 7151, Chesterfield, MO 63006
314-394-4950
A tell-it-like-it-is book on everything that's good, bad and ugly about personal assistance services. Includes information on taxes and withholding along with sample forms.
Cost: $16.95
Date: 1998

Checklist for Evaluating Personal Assistance Services
By: Connie Lyle O'Brien and John O'Brien
Available from: The Center on Human Policy - Syracuse University
200 Huntington Hall, 2nd floor, Syracuse, NY 13244-2340
315-443-3851 -- An information packet that provides information on how to evaluate an individual or service that provides personal care assistance. Looks at characteristics such as availability, comprehensiveness and participant control. 10 pp,Cost: $2

Coming Together for Cultural Understanding
By: Seaside Education Associates, Inc.
1994
Available from: Eagle Wing Communications
P.O. Box 11843, Haverhill, MA 01831-2843
508-373-6632 - This video was developed for the training of personal care attendants for persons of the Latino culture. Gives insights into understanding what disability means to persons of the Latino culture and how to best serve their needs. (30 minutes)Cost: $45.00 + S/H charges

Enhancing Independence: A Personal Care Attendant Training Manual
Available from: Missouri Model Spinal Cord Injury System
1 Hospital Dr, DC046.10, Columbia, MO 65212
573-882-3341 or Email: momscis@health.missouri.edu
Provides step by step assistance in personal care for persons with SCI. 220 pages. Date: 1999 Cost: $25 through Services for Independent Living

Getting from Here to There: A Manual on Personal Assistance
By: Catherine D Ludlum
Available from: Personal Assistance Manual
AJ Pappanikou Center, UCONN
249 Glenbrook Rd U-64, Storrs, CT 06269-2064
A practical guide written from years of personal experience with personal care assistants. It includes information on taxes and withholding along with sample forms. Cost: $10 Date: 1998

A Good Man is Hard to Find
By: Lorenzo W Milam
An article from New Mobility magazine (March, 1999) that relates the story of handling the situation of what to do when your good personal care attendant steals?

Hiring and Management of Personal Care Assistants for Individuals with SCI
By: Debra L Burdsall, MPH, OTR
SCI Project at Santa Clara Valley Medical Center
A booklet that covers all aspects of personal care assistants - from locating and hiring, to training. Includes forms, checklists and resources.
Cost: Free pdf version online. Or contact Rehabilitation Research Center for TBI & SCI
950 S Bascom Ave, Ste 2011,San Jose, CA 95128
408/295-9896 or Email address tbisci@tbi-sci.org

Hiring and Managing Attendants
Summary of a program on SCI Forum, January, 1998 by the NW Regional SCI System, University of Washington, that presents tips on hiring and managing attendants from an individual who uses attendant care.

PCAs I Have Known
An article from New Mobility magazine for July, 2000. This article by Ray Glazier reviews his experiences with personal care attendants and gives the pros and cons of different ones. Interview tips also provided.

Partners in Independence:
The Personal Care Attendants Role in Pressure Sore Prevention
Date: 1990
Producer: RRTC in Community Oriented Services for Persons with Spinal Cord Injury at TIRR
1333 Moursund, D-112, Houston, TX 77030-3405
713-797-5947 - This 12 minute video addresses the ways a personal care attendant (PCA) may provide assistance to his/her employer in the routine of proper skin care. Emphasis is paid to cooperation between the PCA and employer to maintain healthy skin. Includes laminated card of video highlights. Available in either English or Spanish. (12 min)Cost: $30.00 (consumer price); $75 others.

Personal Assistance Services Guide
By: Richard Zulewski
Available from: Utah Assistive Technology Program
Center for Persons with Disabilities
6588 Old Main Hill, Logan, UT 84322-6855
435-797-1991 or Email: mhammond@cc.usu.edu  Guide packed with practical information to guide readers through the process of finding, funding, and managing PAs. Topics include defining needs, recruiting, advertising, interviewing, contracts, paying taxes, training, supervising and finding potential funding sources. 89 pages.Date: 1998 Cost: $14.95 + $3.50 p/h

Personal Assistance Training Manual
Available from: Shepherd Center
2020 Peachtree Rd, NW, Atlanta, GA 30309
404-350-7473 or Email: pat_herndon@shepherd.org - A spiral bound manual that covers key issues in finding, hiring, training and using personal assistants. 24 pages.Date: 1997Cost: $10

Personal Care Assistants - SCI InfoSheet #6 (1995)
PDF Format - or - Text Format
Offers guidelines and ideas on employing and managing a PCA. Topics include advertising, interviewing, and qualities to consider when selecting a PCA. Can be used by rehab service providers with their clients. Spanish version - "Los Asistentes en Cuidado Personal"

Personal Care Assistants: How to Find, Hire and Keep Them
A pamphlet from Craig Hospital that discusses the issue of attendant care and the need that may increase with age. Reviews tips on community resources, pay, contracts,recruiting, and keeping your PCA. (1995)

Personal Care Assistants: Special People for Your Special Care
Discusses steps to take in hiring, training and supervising a personal care assistant. Article from the newsletter, Pushin' On, produced by the RRTC in Secondary Complications in SCI at the University of Alabama at Birmingham, Dept. of P M & R.

Preventing Secondary Medical Complications: A guide for personal assistants to people with spinal cord injury
Available from: UAB - RRTC in Secondary Complications in SCI
619 19th St S, Rm 529, Birmingham, AL 35249-7330
Date: 1992 - An easy-to-read booklet designed to help personal care assistants in working with the person with SCI in his/her daily routines. It gives the PCA instructions for giving proper health care assistance that can help prevent medical complications. A daily schedule/checklist is provided. 25 pages.
Available in PDF or $3 by mail [Evaluate]

Quest for the Best
An article from PN Paraplegia News magazine (July, 1998) that gives tips for how to ease the trauma of finding and dealing with personal care attendants.

RRTC on Personal Assistance Services
World Institute on Disability
510-16th St, Ste#100, Oakland, CA 94612-1500
Email: mailpas@wid.org
This RRTC seeks to further understanding of how personal assistance services (PAS) systems can improve economic self- sufficiency, independent living, and full integration of people with disabilities into society.

Step-by-Step Guide to Training and Managing Personal Assistants
Vol 1: Consumer Guide
Available from: RTC/Independent Living
4089 Dole Bldg, Univ. of Kansas, Lawrence, KS 66045
785-864-4095 or Email: rtcil@ukans.eduAn exceptional tool for new and experienced employers of personal care assistants. Uses a checklist approach that makes the process of hiring, supervising and paying a structured and manageable process.Date: 2nd Ed, 1998Cost: $12.50 + s/h

Taking Care of Yourself while Providing Care
By: Craig Hospital
303-789-8202 or Email: HealthResources@craighospital.org
Book reports the latest caregiver research with interventions and comments. Topics Include, stress, relationships, resources.Cost: $5
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