Life Care Planning
Research Vehicles
The Art of Obtaining Information by Telephone
Locating Health Care Professionals
Locating Miscellaneous Services
Locating Schools/Educational Services
Locating Vocational Rehabilitation Services
Useful Websites for National Facilities and Services
Miscellaneous Links to Equipment and Suppliers
Storing and Retrieving Information
Vocational Issues Related to Life Care Planning
Research Vehicles
For every recommendation in the life care plan there must be support, and for every cost there must be verification. The means planners use to obtain support and verification range from the low-tech letter and conventional telephone to the wide-open spaces of the Internet.
The Internet has developed into the most easily accessible reference for up-to-date resources. As professionals, we must keep abreast of technology in order to benefit from what it can offer. This principle means being willing to investigate new technology, new data storage, and new retrieval systems. This approach does not mean planners should discard a proven, successful method of data collection, retrieval, and the like; however, they must keep an open mind regarding the alternatives that are continually being developed.
Although the Internet has certainly changed and shaped the way we research, the telephone is still an important link to specific information. Keep in mind, however, that not everyone contacted by telephone will be forthcoming and generous with time or information. The life care planner with the competitive edge is the one who understands how best to extract pertinent and beneficial data from sometimes-unwilling sources.
The Art of Obtaining Information by Telephone
First impressions count: Be humble, not demanding. Convey the importance of your call to the patient, yet be relaxed enough to avoid eliciting cautious replies. Ask your questions with clarity and sincerity. Have a rehearsed, ingratiating 30-second introduction speech for the inevitable question “What is a life care planner and why should I talk to you?”
Be optimistic and positive: Do not let the person on the other end of the line try to dismiss you by claiming that he or she does not know the answer. If the person is unable to answer your question, quickly regroup and ask it in a slightly different way. Assume the person you are calling knows the answer, but might not know he or she knows. Be persuasive, but kind and optimistic.
Be complimentary: “I understand you are the area expert on …”
Be persistent and patient: Do not give up. Continue to follow-up on your contacts and respect their time restrictions. Beg for their help, when necessary, and return the favor, when possible.
Be personable: No one enjoys talking to someone who is stiff and all business. To make both of you feel at ease, throw in a bit of small talk. If the other person can feel your “pain,” so to speak, you have a much better chance of acquiring the needed information.
Be flexible: Go with the flow. If you are referred to yet another number to call, do so cheerfully. Eventually, you will be rewarded.
Now that we have reviewed the vehicles used to drive the research and have our roadmap, in the form of an Area Cost Analysis, let’s look at some of the destinations on the map.
Locating Health Care Professionals
When preparing a comprehensive plan spanning the period from the date of evaluation through to life expectancy, it is best to have at least three sources for the major cost items. Therefore, not only will you be using the names and contacts for the patient’s present sources, but you will also have to search out additional and corroborating sources.
The first service referenced on the Area Cost Analysis form is physicians. Locating common specialties such as ophthalmologists, orthopedists, pediatricians, and so on, is as simple as looking them up using the online yellow pages. Here are two simple, yet effective websites:
Online Yellow Pages
- InfoSpace: http://www.infospace.com
- The Real Yellow Pages: http://yp.bellsouth.net
Finding certain specific specialists sometimes requires more precise sites. Many medical disciplines have a professional association. Locate specialists in your patient’s area of service through the association’s online member directory. Here are some commonly used directory sites:
- Directory sites for medical specialties Physiatrists: The American Academy of Physical Medicine and Rehabilitation http://www.aapmr.org/index.htm
- Neuropsychologists: The American Board of Clinical Neuropsychology http://www.theaacn.org/old/diplomates.html
- Neurosurgeons: The American Association of Neurological Surgeons http://www.neurosurgery.org/health/findaneurosurgeon.html
- Nutritionists: The American Dietetic Association http://www.webdietitians.org/Public/FindADiet.htm
- Pain specialists: The American Academy of Pain Medicine http://www.painmed.org/
- Rehab driver specialists: The Association for Driver Rehabilitation Specialists http://www.driver-ed.org/
- Therapeutic riding specialists: North American Riding for the Handicapped Association http://www.narha.org/
If you are unsure of the exact association, consult the National Trade and Professional Associations journal. This text provides detailed contact and background information on more than 7,600 trade associations, professional societies, technical organizations, and labor unions in the United States.
The journal is available from:
Columbia Books, Inc.
P.O. Box 4668
Chestertown, MD 21690
Phone: (888) 265-0600
Fax: (410) 810-0911
Email: info@columbiabooks.com
Homepage: http://www.columbiabooks.com/books.cfm
Locating Miscellaneous Services
Online yellow pages are also useful when attempting to locate the following services:
- Handymen
- Health clubs
- House cleaning
- Massage therapy
Locating Schools/Educational Services
You can locate preschools, public schools, private schools, and school boards easily through the online yellow pages: http://www.infospace.com.
Colleges and universities typically have detailed websites listing not only their current fees and tuition but also degrees and certificate program requirements. To locate a college by state, go to: http://www.newsdirectory.com/college.
A fast, nationwide resource for locating a tutor is Sylvan Learning Centers, 1-800-Educate: http://www.educate.com.
Often a life care plan calls for a special needs camp. The American Camping Association maintains a camp locator at: http://www.acacamps.org.
Home Health Care
Because of their quality of care and longevity of service, national agencies are the first place you should look when researching the cost of home health services and providers. Home health providers are regulated by national, state, and county agencies; therefore, it is important to know not only the city and state but also the county in which the patient resides. It is also advisable to develop a home health service/needs checklist.
Nursing Research Format
Provider:_______________________________________________________________
Telephone #_____________________________ Fax #________________________
Contact: ___________________________ Title _______________________
Areas of service (Counties):
HHA/Hr: $_____ $_____ $_____
HHA/Visit: $_____ $_____ $_____
LPN/Hr: $_____ $_____ $_____ $_____
LPN/Visit: $_____ $_____ $_____
RN/Hr: $_____ $_____ $_____
RN/Visit: $_____ $_____ $_____
Case manager: $_____/Hr.
Mileage charged in addition to hourly rate? ___Yes ___No. If Yes, ____/mile
Rates: (Private pay rate for all costs: ___Yes ___No)
Minimum # of hours per visit: _________
Live-in: ___Yes ___No Daily Rate: $_____
Number of hands-on care hours per day with a live-in: _____
Number of uninterrupted sleep hours for a live-in per night: _____
· Definition of live-in services as defined by this specific agency:
________________________________________________________________________
· When was the last time this agency actually supplied a live-in?
________________________________________________________________________
Therapies:
PT ___Yes ___No $_____/visit
OT ___Yes ___No $_____/visit
ST ___Yes ___No $_____/visit
Recreational therapy: ___Yes ___No $_____/visit
Transportation:
Can staff member transport patient? ___Yes ___No
Personal car? ___Yes ___No Or patient’s car: ___Yes ___No
Skill responsibilities:
Can aide level:
· Administer medications: ___Yes ___No
· Perform bowel stimulation: ___Yes ___No
· Administer G-tube feeds: ___Yes ___No
· Insert catheter: ___Yes ___No
· Trim finger/toe nails: ___Yes ___No
Can LPN level:
· Perform trach care: ___Yes ___No
· Perform vent care: ___Yes ___No
· Trim finger/toe nails: ___Yes ___No
An agency may have a policy that aides, trained by RNs, can do certain invasive procedures such as bowel stimulation, catheter changes, and so on. Under this arrangement, it is the specific RN training the aide that is ultimately liable and responsible for the activities of the aide. Therefore, in this agency, in practice, are the aides performing such services in their day-to-day activities?
Is RN supervision (included with):
· Live-in or aide care: One visit per _________(wk/month/qtr)
· LPN Care: One visit per _________(wk/month/qtr)
Is there an additional charge for the RN supervision visit? ___Yes ___No
If Yes: $_____/visit
Comments: _____________________________________________________________________________
Research by: _________________ Date: _________________
Locating Home Health Care
To locate national home health agencies that serve a patient’s geographic area, check the locators at these websites:
Gentiva Home Health: http://www.gentiva.com
- Click on “Agency Locator”
Interim Home Health: http://www.interimhealthcare.com
- Click on the map next to “Locations Coast to Coast”
Kelly Assisted Living: http://www.kellyassistedliving.com
- Click “About Us”, then choose “Our Locations”
- Click on the link to perform a search
Maxim Home Health: http://www.maxhealth.com
- Click “Office Listing” to view the map
Nurse Finders: http://www.nursefinders.com
- Choose “home care” under Clients to view general information
- Click “locations” to view the list of staffing offices
If your search requires further resources, search the databases at the Case Management Resource Guide website: http://www.cmrg.com
This guide can provide information for a number of programs and facilities, such as:
- Home care
- Rehabilitation
- Sub-acute care
- Nursing facilities
- Assisted living facilities
- Hospice
- Long-term acute care
- Hospitals
- Psychiatric and addiction care/facilities
Locating Vocational Rehabilitation Services
You can locate vendors for vocational evaluations, job coaching, and other supportive work services through the patient’s local Department of Vocational Rehabilitation. The Pennsylvania Rehabilitation Council website offers a complete list of DVR offices by state at http://www.parac.org/svrp.html.
Geographically specific wage data can be downloaded and printed from the Bureau of Labor Statistics at http://stats.bls.gov/oes/2001/oessrcma.htm
The following publications are published on the Bureau’s website:
- Metropolitan Area Occupational Employment and Wage Estimates: Employment and wage estimates by occupation, divided into seven tables: managerial, professional, sales, clerical, service, agricultural, and production.
- Go to http://stats.bls.gov/oes/oes_data.htm
- Choose the correct year
- Occupational Outlook Handbook: Revised every two years, the handbook describes what workers do on the job, working conditions, the training and education needed, earnings, and expected job prospects.
Facilities and Programs
When you are researching availability and costs for facilities and programs that offer services to catastrophically injured patients, you may find the yellow pages online or offline of little use. Many times, patients will be forced to seek services outside of their geographic area. Therefore, you may need to consult national databases:
Useful Websites for National Facilities and Services
Commission on Accreditation of Rehabilitation Facilities (CARF): http://www.carf.org
Case Management Resource Guide: http://www.cmrg.com
Miami Project: http://www.miami.edu/miami-project/resinfo.htm
National Spinal Cord Injury Association: http://www.spinalcord.org
Spinal Cord Rehab Centers: http://www.spinalcord.uab.edu/show.asp?durki=21810
Shepherd Center (A Catastrophic Care Hospital): http://www.shepherd.org
Brain Injury Society of America: http://www.biausa.org
United Cerebral Palsy (UCP): http://www.ucp.org
To locate an intermediate care facility for the developmentally disabled (ICF/DD) facility, visit the state regulations and licensing site for the state in which your patient resides. Here, you will find a complete listing of facilities licensed and inspected by the state.
Assisted living facilities (ALFs) are also licensed and regulated by the state. Because of the evolving demographics served by ALFs, you may find it necessary to locate and download the state’s regulations. Become familiar with the state government’s websites in all the geographic areas in which you work.
Labs and Diagnostic Testing
It can be hard to keep track of all the abbreviations used for labs and diagnostics. For example:
- ECG, EKG: Electrocardiogram
- ECHO: Echocardiography
- EEG: Electroencephalogram
- EGD: Esophagogastroduodenoscopy
The following website offers an easy chart to aid the life care planner in deciphering various abbreviations:
Abbreviations for Diagnostic and Laboratory Tests: http://www.mtio.com/lupus/proabbr.htm
For an explanation of specific diagnostic tests, go to this website:
Harvard Medical Schools Guide to Diagnostic Tests and Procedures: http://www.health.harvard.edu/fhg/diagnostics.shtml
To better understand the many clinical lab tests that are part of the diagnosis and treatment of a broad range of conditions and diseases, go to:
Lab Tests Online: http://www.labtestsonline.org/understanding/
Miscellaneous Links to Equipment and Suppliers
- Able Net Inc.: http://www.ablenetinc.com
- Adaptivation Inc.: http://www.adaptivation.com
- Assistive Technology Inc.: http://www.pvcdme.com
- Global Resource for Orthotics and Prosthetics: http://www.OandP.com
- Invacare: http://www.invacaresupplygroup.com
- Mulholland Positioning Systems: http://www.mulhollandinc.com
- Prentke Romich Co.: http://www.prentrom.com
- Respiratory equipment: http://www.nelsonoxygen.com
- Ro Ho cushions: http://www.phc-online.com
- Scooters: http://www.scooterone.com
- Sunrise Medical One-Stop: http://www.sunrisemedicalonline.com
- Words Plus: http://www.words-plus.com
Mattress systems and beds
- Mellenair: http://www.mellenair.com
- Progressive Medical Inc.: http://www.progressivemedicalinc.com
- Select Comfort: http://www.selectcomfort.com
- Craftmatic: http://www.Craftmatic.com
- Adjustablebeds.com: http://www.1-Adjustablebeds.com
National medication pricing resources
- Eckerds: http://www.eckerds.com
- Walgreens: http://www.walgreens.com
Links to Federal Information
- Federal government: http://www.firstgov.gov
- Medicaid phone numbers: http://cms.hhs.gov
- Social Security Administration: http://www.ssa.gov
- U.S. Federal Government Agencies: http://felonopportunities.com/government-agencies.html
- National Center for Dissemination of Disability Research: http://www.ncddr.org
- National Clearinghouse of Rehabilitation Training Materials: http://www.nchrtm.okstate.edu/
- National Library of Medicine, MEDLINE database: http://www.nlm.nih.gov/databases
- U.S. government consumer health information (Healthfinder): http://www.healthfinder.gov
Storing and Retrieving Information
To present a life care plan that is indisputable and succinct, you must document your research carefully. To follow a strict, structured methodology of information retrieval, collection, and storage, you will need to create a life care plan database. Below are two products available to assist you in this effort:
LCP STAT
Life Care Planning, Case Management software, by Randall Thomas, Ph.D., P.O. Box 1347, Ridgeland, MS 39158; 601-991-0551, Fax 601-952-0072, Email lcpstat595@aol.com.
This program comes in several modules or sizes, depending on the needs of the rehabilitation professional. Some of the highlights of the software’s capabilities include:
- Tracks patient information
- External/internal case management
- Cost summaries
- Production reports
- Resource management
- Complications
- Life care tables
- Payments
- Invoice
Life Care Planning For the PC
This is a life care planning program designed to work with Microsoft Word® and/or WordPerfect®, by Ann Maniha, RN, CLCLP.
The program can be purchased from Ahab Press at: http://www.ahabpress.com/lifecareplan.htm
The preceding discussion introduced the process of researching costs and patient-specific information. Each professional will develop his or her own system of organization and presentation. However, it is important that all life care planners adhere to the basic tenets and methodologies of the planning process.
Vocational Issues Related to Life Care Planning
This section will introduce readers to the role of the vocational counselor in the life care planning process. Work is highly valued in our society, and the presence of a disability sometimes complicates rehabilitation efforts to return patients to work. The life care planner must be aware of evaluation strategies for identifying job options, accommodations, or alternatives that offer fulfillment and meaningful experiences when returning to work is not a reasonable goal.
The Vocational Evaluation
A vocational evaluation is a comprehensive assessment of a patient’s interests, aptitudes, and physical abilities. The evaluation is comprised of many components, which may include a functional capacity evaluation, a transferable skills analysis, interest surveys, personality inventories, achievement tests, work samples, work site observations, and other methods of determining whether a patient can realistically expect to return to work. As a result of this process, patients may be able to identify work categories for which they are well suited. If a return to work is not realistic, the patient may be able to identify activities of interest that are within his or her physical capacity.
A functional capacity evaluation is generally completed in a single day (sometimes two days) and measures the ability of the patient to perform physical tasks. The patient is asked to demonstrate the ability to stoop, bend, walk, climb, push, and lift; performance of these tasks is measured.
A transferable skills analysis is not a physical assessment, but a study of the patient’s previous educational/work experience and current level of function. Residual capacities may “transfer” into comparable work classifications and help to establish realistic vocational goals.
The vocational counselor will determine whether a return to work is feasible. If a patient is believed to be able to return to work, the counselor will identify the extent to which he or she may be expected to participate, the associated costs, and the vocational damages. If a patient is not able to return to work, the counselor will identify costs associated with vocational pursuits in addition to the vocational damages resulting from the injury.
In addition to the performance measures, the vocational counselor also considers whether the patient would be able to perform the assessed tasks over an extended period of time (as may be required for certain jobs): the patient’s subjective complaints, limitations of the test instruments used to assess the patient, and the possibility that the patient may be receiving benefits by maintaining his or her role as an individual with a disability (secondary gains). The vocational counselor must judge whether the results of the FCE are an accurate profile of the patient’s physical capacity.
The vocational counselor may begin his/her analysis by establishing the patient’s earnings at the time of the injury. Next, the patient’s earnings capacity is determined by comparing the patient’s level of functioning pre-injury versus his or her present level of functioning. From this comparison, the counselor can compare the patient’s levels of employability and an economist can project the total lost earnings capacity over the life expectancy of the patient.
Employability vs. Placeability
Employability refers to a patient’s access to the labor market. For example, if the injury has eliminated the patient from all work classifications, he or she would have a very low probability of employability.
Placeability refers to the probability that the patient will actually be hired into a position. For example, even though patients may be able to perform the required duties of a job, they may not be hired because they must have a flexible schedule due to medical treatments or because they experience sudden, severe headaches that would result in frequent, unplanned absences.
References
Deutsch, P. (1990). A guide to rehabilitation testimony: The expert’s role as an educator. Orlando, FL: PMD Press.
Deutsch, P., & Raffa, F. (1981). Damages in tort actions. New York, NY: Matthew Bender and Company, Inc.
Deutsch, P., & Sawyer, H. (2002). A guide to rehabilitation. White Plains, NY: Ahab Press, Inc.
International Academy of Life Care Planners. (2003). Standards of practice for life care planners. International Academy of Life Care Planners. Available at: http://www.ialcp.org.
Merriam-Webster Dictionary. Available online at: http://www.m-w.com/home.htm.
Thomas, R., and Kitchen, J. (1996). Private hire: The real costs. Inside Life Care Planning, 1(3), 3-4.
Weed, Roger O. (1998). Life care planning and case management handbook. Boca Raton, FL, CRC Press.
Whiteneck, G., Charlifue, S, and Gerhart, K. (1993). Aging with spinal cord injury. New York, NY: Demos Medical Publishing, Inc.