For several years, the National Rehabilitation Information Center (NARIC) has been funded by the U.S. Department of Education to provide rehabilitation related information to people with disabilities, professionals in the field, and members of the public. It has prepared answers to the most common questions and posted these as individual links on its web site, located at http://www.naric.com/naric I wanted a single document containing these questions and answers. Since it took significant time to download and compile the 16 separate links, I thought others may appreciate the document I've prepared below. Jamal Mazrui National Council on Disability Email: 74444.1076@compuserve.com ---------- The Answer Queue: NARICs Most Frequently Asked Questions _________________________________________________________________ For 18 years NARIC has operated a national telephone information and referral service; over the years we have provided information on rehabilitation, disability, and assistive technology to tens of thousands of people. Below are answers to some of our most frequently asked questions. (See also Disability resources available from NARIC.) * What are the tools for effective advocacy? What can I do if I'm not getting the products or services I need? * Where can I go for help in understanding SSI, SSDI, Medicare, or Medicaid? * Who can help me get funding for assistive technology? * How can I get government services to which I am entitled (and especially Vocational Rehabilitation)? * How can I learn how to provide care for someone who is elderly or who has a chronic illness? * How can I learn about which rehab program or hospital to choose? * How can I find out about accessible apartments in my geographical area? * Where can I obtain statistics about disabilities? * How can I learn more about carpal tunnel syndrome and other environmental hazards in the workplace? * What resources are available to help me learn about chronic fatigue syndrome? * What information is available to help people with disabilities to drive? * I have a disability and I want to further my education (or career). What grants, loans, or scholarships are available? * What are Independent Living Centers (ILCs) and what services do they provide? * Where can I get information about National Rehabilitation Week? * I've heard that I should investigate Vocational Rehabilitation. What can they do for me? ---------- What are the tools for effective advocacy? What can I do if I'm not getting the products or services I need? In this document: 1) Tips adapted from "Becoming an effective advocate," by Karen Meek, NARIC Quarterly Newsletter, 4(1), Summer 1994. 2) Bibliography of resources for negotiation and advocacy. 3) Tips adapted from "Voices of consumers: Being your own advocate," by D. Fedor, D., TBI-NET, 3(2), (1994). 4) Resources for patient rights and advocacy, especially in hospital settings. Part 1: Tips adapted from "Becoming an effective advocate," by Karen Meek. Individuals interested in acting as advocates for people with disabilities can take certain steps to improve their effectiveness. An advocate should: 1) Learn more about available funding and appropriate rehabilitative services by contacting state and county-level organizations serving people with disabilities, as well as the state legislators. Assistance in locating state agencies and self-help groups serving people with disabilities can be obtained by contacting the National Rehabilitation Information Center at 800/346-2742 (V), 301/588-9284 (V), or 301/495-5626 (TT). State legislators are found in the blue pages of the local phone book under "State Government." 2) While searching for information, keep written records of dates of contact, people spoken to, and any promised action(s). Good record keeping improves accountability and more often than not, achieves desired results from individuals in decision-making positions. 3) Contact state legislators to express your concern and desire for improved services, especially if existing programs seem inadequate or if state programs provide funding primarily for institutional care. 4) Encourage legislators to sponsor and support system changes that help people with disabilities to attain the highest quality of life possible. If a legislator is not familiar with the specific issue(s) affecting people with disabilities, information describing these issues--and what can be done about them--should be sent to him or her. 5) Make an appointment to meet with your local state legislator. Ask him or her to assist in scheduling an appointment for the advocate with the state Governor or Lt. Governor for the same purpose. A face-to-face meeting is much more effective than a call or a letter. 6) FOLLOW UP! By showing a commitment to improve services for people with disabilities, legislators will respond more favorably. 7) Inform the public by asking the local newspaper for assistance. Most people know little of the struggle facing people with disabilities and their families; support from the public cannot be gained without more education. 8) Seek out others from the local area or state who are acting as advocates for other people dealing with similar issues. Initiating an advocacy group is recommended because working together increases strength and provides support for one another. 9) Meet with state and local legislators as an advocacy group, but continue to advocate individually. 10) Choose one day each week or month as a follow-up day and contact the legislator's office to find out what has been done since previous contact by reminding the office of the serious issue or issues that deserve their attention. Part 2: Resources for negotiation and advocacy Beahm, G. W. (1988). Write to the top: How to complain and get results--fast! Norfolk, VA: Donning. 116 p. Berry, D. (1990). How to complain: Practical advice on how to get a fair deal. London: BBC Books. 304 p. OTHER NAME: You and yours: How to complain. Franklin, H. B. (1992). The squawk book: The art of effective griping: How and where to complain and get results. Los Angeles: Webejamn. 115 p. Garnas, L. (1994). How to use people to get what you want and still be a nice guy!: A guide to networking know-how. Princeton, NJ: Peterson's. 216 p. Gross, T. S. (1992). How to get what you want from almost anybody. New York: MasterMedia. 189 p. Karrass, C. L. (1992). The negotiating game: How to get what you want (Rev. ed.). New York: HarperBusiness, 258 p. Thomas, D. B. (1994). How to write powerful complaint letters and others: A step-by-step guide. College Park, MD: Boone-Thomas Enterprises. 122 p. Westheimer, P. H., & Mastro, J. (1994). How to write complaint letters that work: A guide to one of the best methods of resolving conflicts & getting results. Indianapolis, IN: Park Avenue Publishers. U.S. Office of Consumer Affairs. (1996). How to write a complaint letter. Washington, DC: Author. 1 p. Available on page 598 of the 1996 Information Please Almanac, found in most libraries. Part 3: From "Voices of consumers: Being your own advocate," by D. Fedor (1994). TBI-NET, 3(2), 4. 1) Always get a lot of information. Certain steps must be done to access any type of help, for example filling out applications, providing medical documentation, going to an interview, etc. Take lots of notes. 2) If you don't understand something, ask questions. You have a right to understand what is going on. Don't be afraid to ask for explanations if something is not clear. There are no penalties for asking, but if you don't ask questions when you don't understand something, you may regret it down the road. 3) If you have difficulty understanding verbal instructions, if people speak too fast for you to follow the conversation, or you have trouble writing, use a tape recorder for all meetings you attend. Under the Americans with Disabilities Act, if you have a cognitive disability using a tape recorder is a reasonable accommodation. The only requirement is that you let the other party know you are taping the conversation and why. 4) Always ask the name and title of the person you are speaking to. Try to get back to the same person you originally called and strike up a personal relationship if possible. Make a note of all telephone calls. Save names, telephone numbers, what was said and by whom. A log book, tape recorder, or computer is an easy way to do this. 5) Be persistent. If you don't get what you want in a reasonable time, call again. If after three calls you get no response, write a letter. If you have trouble writing letters, get someone to help you. Make copies of all correspondence for your own records. Never send original documents through the mail, unless specifically instructed to do so. Send all letters and requested documents by certified mail, with return receipt requested. This accomplishes two things: it provides documentation that you tried to get someone to do something and also ensures a response. 6) Every worker has at least one supervisor. If you are not being helped, ask to speak to the supervisor and continue going up the chain of command until you get satisfaction. Get names and titles of all people you speak to and log it in your record with the date of your call and conversation. 7) Stay calm; don't lose your temper. You are making a call to accomplish something. If you lose your temper, you alienate the very people you need on your side. 8) Every agency has special accommodations for people who are homebound. Often it takes longer to access these services, but they are there. So ask for them specifically. 9) Use advocacy offices. Call your local independent living center (ILC), your local politicians, etc. They are there to help, and they may have connections within certain agencies who can assist with your case. However, it is important to try on your own first. Then, if you run into problems, bring the documentation of all your attempts to ILC advocates and political contacts so they can assist you. 10) Reach out to organizations such as Coalition of Housing for the Disabled, Disabled in Action, Mobility Through Access, etc. Being politically and socially involved is a key in having a voice in the system and in making changes in the system. You need to know what is going on and how it works to be an effective advocate for yourself. You are also educating the service delivery system so that services are designed that actually meet needs that people have. 11) Above all, don't give up. The service delivery system is huge and bureaucratic and was not designed for simple access. In fact, at times it may seem that it was designed to wear people down so that they will eventually go away. If you need something, keep asking and writing. Be persistent; keep the pressure on until you succeed. But remember you are dealing with people, so don't expect miracles. Never give up. 12) Remember the law is on your side. You have a right to obtain the services you need. Part 4: Resources for patient rights and advocacy, especially in hospital settings. Below is a select list of books and videotapes on patient advocacy/patient rights. This list is not intended to be exhaustive. Most of the materials listed may be available at a federal-depository library (e.g., usually a university library) in your local area. American Hospital Association. (1990). A patient's bill of rights. Chicago: Author. 2 p. National Society of Patient Representatives and Consumer Affairs, American Hospital Association. (1990). Patient representation and consumer affairs. Chicago: Author. Lucas, D. H. (1990). Patient rights: The art of caring [Video]. Garden Grove, CA: Medcom. 19 min. Willard, S. (1992). What about me? A video discussion program on nursing home residents' rights [Video]. Washington, DC: American Association of Retired Persons. 28 min. Macklin, R. (1993). Enemies of patients. New York: Oxford University Press. 250 p. Reeter, A. K. (1993). Patient rights [Video]. Tuscon, AZ: Medfilms. 11 min. Summary: Provides an overview of patients' rights as required by the Joint Commission for Accreditation of Healthcare Organizations. Focuses on advance directives, informed participation, privacy and confidentiality, the right to participate in ethical discussions, and considerate and respectful care. McCarrick, P. M. (1993). A right to health care. Washington, DC: Georgetown University, Kennedy Institute of Ethics, National Reference Center for Bioethics Literature. 13 p. Chapman, S. & Lupton, D. (1994). The fight for public health: Principles and practice of media advocacy. London: BMJ Publishing Group. 270 p. Phillips, L. B. (1994). In the name of the patient: Consumer advocacy in health care. Chicago: American Hospital Association, National Society for Patient Representation and Consumer Affairs. Chapman, A. R. (Ed.). (1994). Health care reform: A human rights approach. Washington, DC: Georgetown University Press. 314 p. Alzheimer's Association. (1995). Building strong grassroots advocacy campaigns [Microform]. Summary: A handbook for Alzheimer's Association chapters and friends, prepared for the National Eldercare Initiative. Washington, DC: Author. 1319 F Street NW, Suite 710, Washington, DC 20004. Emergency Nurses Association. (1995). Presenting the option for family presence [Slide presentation]. Park Ridge, IL: Author. 54 slides. Summary: Provides professionals with a resource for the development and implementation of a family presence program. Last updated: August 1996 ---------- Where can I go for help in understanding SSI, SSDI, Medicare, or Medicaid? Call 800/862-5553, a national toll-free service-delivery advocacy line run by Government Benefit Specialists (a private company with a staff of trained advocates). Consumers can be guided and directed through problems regarding SSI, SSDI, Medicare, or Medicaid. Last updated: April 1995 ---------- Who can help me get funding for assistive technology? The Assistive Technology Funding and Systems Change Project (ATFSCP) can help. Typical funding questions such as "How do I get funding for my van from vocational rehabilitation?" are answered by the Information Specialist staffing the Technical Assistance Assistive Technology Funding Information Line, at 800/827-0093, or through their web page at http://www.assistech.com/atfscp.com The Information Specialist generally does the following when handling funding questions: 1) She finds out from the caller the exact situation/funding problem. 2) She identifies the agencies mandated to provide services related to assistive technology under different pieces of legislation and regulations in the caller's state. 3) She informs the caller what the eligibility requirements are for each potential funding agency or source. She also gives the caller the "right questions" to ask of the funding source. Equipped with these questions and appropriate contact information, the person can usually obtain the appropriate funding information/device from the potential funding agency/source. 4) She also tells the caller to call her back and let her know what the results of the contact with the particular agency or agencies were, because she documents problems, funding barriers, or successes. If the person does not call her back, she calls them to find out what the results were. 5) If the patron encountered problems that are not resolved, she may put the person in contact with a member of United Cerebral Palsy's network of funding experts. 6) The funding expert then talks to the person and provides additional information and advice which the patron can use to get needed information or services. 7) If the person still reports having problems getting services from an agency that is supposed to provide these services, direct advocacy is used as a last resort--one of the funding experts contacts the agency on the person's behalf. Members of the funding experts network are drafting materials on various topics related to funding. Other resources: The above project is funded by the same agency that funds NARIC, the National Institute on Disability and Rehabilitation Research (NIDRR). NIDRR also funds a State Technology Assistance project in each state and in U.S. territories and outlying areas. These projects help consumers with assistive technology issues; information about the project in your state, territory, or outlying area can be found in the NIDRR Program Directory, available in the publications area of the NARIC Internet pages. Last updated: March 1995 ---------- How can I get government services to which I am entitled (and especially Vocational Rehabilitation)? Under section 370 of the Rehabilitation Act of 1973, all states are required to have a Client Assistance Program (CAP) that assists consumers who are dissatisified with services they are, or are not, receiving, to which they are entitled (the primary focus is Vocational Rehabilitation). CAP services may include providing the client with information, mediation of VR counselor-client problems, clarification of eligibility criteria, counseling, and referral to other programs and agencies. The Rehab Act states that each state advise clients of the existence of the client assistance program at the time they come into contact with VR or when developing the Individualized Written Rehabilitation Program. Most CAP's can also be reached through toll-free phone numbers, found in CAP brochures or the state government section (the Blue Pages) of your local phone book under Vocational Rehabilitation Services. They are also listed in the State Agencies' Section of the Case Management Resource Guide, which is available in many libraries. Last updated: August 1996 ---------- How can I learn how to provide care for someone who is elderly or who has a chronic illness? Below is a reading list of publications on caregiving. Susik, D. H. (1995). Hiring home caregivers: The family guide to in-home eldercare. San Luis Obispo, CA: American Source Books. 205 p. Capossela, C., & Warnock, S. (1995). Share the care: How to organize a group to care for someone who is seriously ill. New York: Fireside. Smith, K. S. (1994). Caring for your aging parents: A sourcebook of timesaving techniques and tips (Rev. ed.). San Luis Obispo, CA: American Source Books. 117 p. Watt, J. (1994). A care-giver's guide: Practical solutions for coping with aging parents or a chronically ill partner or relative (2nd ed.). North Vancouver, BC, Canada: Self-Counsel Press. Fogel, B. S. (1994). Cognitive dysfunction and the need for long-term care: Implications for public policy. Washington, DC: Public Policy Institute, American Association of Retired Persons. 52 p. Heath, A. (1993). Care log: A planning and organizing aid for long distance caregivers: The companion volume to long distance caregiving. Lakewood, CO: American Source Books. Doka, K. J. (1993). Living with life-threatening illness: A guide for patients, their families, and caregivers. New York: Lexington Books/Maxwell Macmillan International. 284 p. Bane, S., & DeCroix, S. (1992). Caregiving for frail elders in rural America. Kansas City, MO: University of Missouri-Kansas City, National Resource Center for Rural Elderly. 42 p. Milstein, L. B. (1994). Giving comfort: What you can do when someone you love is ill. New York: Penguin Books. 132 p. Last updated: January 1996 ---------- How can I learn about which rehab program or hospital to choose? Below are several resources for helping consumers choose the best rehabilitation program or hospital for their needs. Center for the Study of Services. (1994). Consumers' guide to hospitals: How to choose a hospital: Death rates at 5,500 hospitals, best hospitals for specific types of cases, how to get the best care wherever you go, and cutting your hospital costs (1994 ed.). Washington, DC: Author. 224 p. Scheller, M. D., & Berdahl, D. (1990). Building partnerships in hospital care: Empowering patients, families, and professionals. Palo Alto, CA: Bull. 304 p. McCann, K. K. (1994). Take charge of your hospital stay: A "start smart" guide for patients and care partners. New York: Insight Books. 341 p. Health Care Investment Analysts, Inc. (1995). Directory of medical rehabilitation facilities. Baltimore: HCIA Inc.; King of Prussia, PA.: NovaCare. U.S. House of Representatives, Committee on Government Operations, Human Resources and Intergovernmental Relations Subcommittee. (1992). Rehabilitation facilities for people with head injuries: Hearing before the Human Resources and Intergovernmental Relations Subcommittee of the Committee on Government Operations, House of Representatives, One Hundred Second Congress, first session, February 19, 1992. Washington, DC: U.S. G.P.O.: For sale by the Superintendent of Documents, Congressional Sales Office. 370 p. SUDOC#: Supt. of Docs. no.: Y 4.G 74/7:R 26/3. England, B., Glass, R. M., & Patterson, C. H. (1989). Quality rehabilitation: Results-oriented patient care. Chicago: American Hospital Publishing. 182 p. Schuch, C. P., & Sekerak, D. K. (1996). Management in rehabilitation: A case-study approach. Philadelphia, PA: F.A. Davis. 143 p. Lidz, C. W., Fischer, L., & Anold, R. M. (1992). The erosion of autonomy in long-term care. New York: Oxford University Press. 195 p. Cate, F. H., & Gill, B. (1991). The Patient Self-Determination Act: Implementation issues and opportunities: A white paper of the Annenberg Washington Program. Washington, DC: Annenberg Washington Program, Communications Policy Studies, Northwestern University. 73 p. Available from: Annenberg Washington Program, 1455 Pennsylvania Avenue NW, Suite 200, Washington, DC 20004. Karr, K. (1991). Promises to keep: The family's role in nursing home care. Buffalo, NY: Prometheus Books. 127 p. Bole, Thomas J., & Bondeson, W. B. (1991). Rights to health care. Boston: Kluwer Academic. 380 p. National Association of Rehabilitation Facilities. (1992). Comprehensive outpatient rehabilitation facilities: Who they are and what they do. Washington, DC: Author. 78 p. Hall, L. K. (1993). Developing and managing cardiac rehabilitation programs. Champaign, IL: Human Kinetics. 232 p. Di Lima, S. N., & Painter, S. J. (1995). Medical rehabilitation services: Forms, checklists, and guidelines. Gaithersburg, MD: Aspen. Last updated: January 1996 ---------- How can I find out about accessible apartments in my geographical area? Two options are to contact the National Accessible Apartment Clearinghouse (NAAC) and the Center for Independent Living in your area. The National Accessible Apartment Clearinghouse (NAAC), 1111 - 14th Street NW, Suite 900, Washington, DC 20005. 800/421-1221. The National Apartment Association maintains a listing of approximately 3,000 accessible apartments across the country. The tollfree number is connected to an answering machine that encourages callers to leave their name, address, and phone number, and where they want to live, and accessibility information will be provided. You may also wish to call your local Center for Independent Living (CIL). CILs can be located by consulting the Case Management Resource Guide, available through a library or by calling NARIC. Ask for the CIL's housing coordinator, and if the CIL has none, speak to the peer counseling coordinator. Every CIL offers peer counseling services; this person can connect you to the CIL's housing coordinator. Last updated: November 1994 ---------- Where can I obtain statistics about disabilities? National statistical data on disability come from three major sources: 1) the National Health Interview Survey (NHIS), 2) the Survey of Income and Program Participation (SIPP), and 3) the National Medical Care Utilization and Expenditure Survey (NMCUES). The NHIS, with its various supplements, and the SIPP collectively account for about 98 percent of the available federal, statistical data on disability. The remaining 2 percent comes from the NMCUES. The NHIS and the NMCUES are conducted by the National Center for Health Statistics (NCHS), and the SIPP is conducted by the U.S. Bureau of the Census. NCHS and the census bureau also produce numerous reports generated from these surveys, which are available at no charge or for a nominal fee. Other reports may be obtained through the U.S. Government Printing Office (GPO). An example of a recent report available from GPO is: McNeil, J. (1993). Americans with disabilities-1992: Data from the survey of income and program participation. Organizations: National Center for Health Statistics (NCHS), Centers for Disease Control, Public Health Service, U.S. Department of Health and Human Services, 6525 Belcrest Road, Room 1064, Hyattsville, MD 20782. 301/436-7093. The primary information service of NCHS is distributing statistical data through published reports. One of these reports is the Vital and Health Statistics Series, which contains data on program and collection procedures, evaluation and methods research, and analytical studies. This series includes publications on (1) the Health Interview Survey, which gives statistics on illness, disability, accidental injuries, and the use of hospital, medical, dental, and other services; and (2) the Health and Nutrition Examination Survey, which provides data from direct examination, testing, and measurement of national samples, used to calculate distributions of the population with respect to physical, physiological, and psychological characteristics. Reports in these NCHS series contain disability statistics data on vision loss, hearing loss, speech disorders, paralysis, absence of extremities, and orthopedic conditions. The Advance Data from Vital and Health Statistics series, first published in 1976, was the vehicle for early release of selected findings from the health and demographic surveys of NCHS. Most of these releases are followed by detailed reports in the Vital and Health Statistics Series. NCHS's publications catalog is an index to the Vital and Health Statistics Series and Advance Data from Vital and Health Statistics, organized according to demographic and socioeconomic variables. The publications catalog, single copies of Advance Data releases, and information on reports from the Vital and Health Statistics Series are available free from NCHS. U.S. Bureau of the Census, Household Economic Survey Division, Office of Disability Policy Analysis, Washington, DC 20233-3300. 301/763-8300, 301/763-8531 (Fax). This agency produces the other major source of national data on disability, called the Survey of Income and Program Participation (SIPP). Other sources of disability statistics: Conwal Incorporated. 510 North Washington Street, Suite 200, Falls Church, VA 22046. 703/536-3200 (V), 703/534-1814 (TT). This NIDRR-funded project prepared and revised the Summary of Data on Handicapped Children and Youth (1985) publication and renamed it the Summary of Data on Children and Youth with Disabilities (1994). The purpose of this publication summarizes existing data on children and youth with disabilities in the United States. The report also serves as a data reference for a target population, including people with disabilities and their families, policy makers, administrators, vendors, and the general public. The document is also available from NARIC (see publications form). Disability Statistics Rehabilitation Research and Training Center. University of California/San Francisco, Institute for Health and Aging, Box 0646, Laurel Heights, San Francisco, CA 94143-0640. 415/502-5217. Contact: Information Specialist. The center conducts research in areas of high priority in the field of disability and disability policy, including costs, employment statistics, health and long-term care statistics, statistical indicators, and congregate living statistics. Statistical information is disseminated through published statistical reports and abstracts, a CD-ROM subscription, journals, professional presentations, and a publications mailing list. Training activities and resources (such as a predoctoral program) disseminate scientific methods, procedures, and results to both new and established researchers, policy makers, and other consumers, and assists them in interpreting statistical information. Medical Rehabilitation Education Foundation (MREF). 1910 Association Drive, Reston, VA 22091-1502. 800/438-7342 (V), 800/688-6167 (TT). Contact: Information Specialist. MREF, a nonprofit organization of approximately 300 rehabilitation facilities across the country, was created in 1992 to increase public awareness and understanding of the value of medical rehabilitation through a variety of educational and outreach programs directed at consumers, physicians, insurers, employers, and governmental policymakers. MREF's information specialists can provide general information on medical rehabilitation facilities and referral services. National Center for Medical Rehabilitation Research (NCMRR). NIH, 9000 Rockville Pike, Room 2A-03, Building 6100 E, Bethesda, MD 20892. 301/402-2242. Funded by the U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, the center is located at the National Institute of Child Health and Human Development. Mandated by Public Law 101-613 (1990), NCMRR's mission is to conduct and support research in medical rehabilitation, to support research training programs, and to further research in assistive devices such as prosthetic devices. National Rehabilitation Hospital (NRH) Research Center. 102 Irving Street NW, Washington, DC 20010. 202/466-1900. In October 1993 NRH's Research Center was awarded a two-year field-initiated research grant, entitled The Health Care Utilization and Cost Experience of Working-Age Persons with Disabilities: An Analysis of the National Medical Expenditure Survey (NMES). This project obtained and analyzed data from the NMES by acquiring the public-use data tapes derived from this survey, and converted the data into a PC-usable format. Some of the research questions being analyzed are the following: (1) The utilization and cost profile of working-age people with disabilities in terms of hospitalization, physician visits, dental visits, medical supplies, prescriptions, personal assistance, and assistive technology; (2) the manner in which health care utilization costs vary by degree of activity limitation and by need for personal assistance; (3) how people with disabilities compare with people without disabilities in terms of health care utilization costs; (4) how health care utilization and costs vary by employment status; (5) how working-age people compare with their elderly counterparts in terms of health care utilization and costs; and (6) how health care utilization and costs vary within selected groups of people with disabilities, people in special facilities, in racial and ethnic minorities, and in different age groups. Uniform Data System (UDS) for Medical Rehabilitation. 232 Parker Hall, SUNY-South Campus, Buffalo, NY 14214. 716/829-2076. This project is currently working on an American Rehabilitation Association-sponsored research report to develop a classification system for medical rehabilitation--predicting length of stay charges and outcomes. The latest copy of the UDS Update (a newsletter on the most recent activities) is available. The Washington Business Group on Health (WBGH), Institute for Rehabilitation and Disability Management (IRDM). 229 1/2 Pennsylvania Avenue SE, Washington, DC 20003. 202/408-9320 (V), 202/408-9333 (TT). WBGH's IRDM researches issues on rehabilitation services related to insurance claims, employee benefits, and case management. National Center for Education Statistics (NCES), 555 New Jersey Avenue NW, Washington, DC 20208. 800/424-1616. NCES's mission is to collect, analyze, and disseminate data regarding education. Last updated: October 1994 ---------- How can I learn more about carpal tunnel syndrome and other environmental hazards in the workplace? Organizations: National Institute on Occupational Safety and Health (NIOSH) Information Center. 800/35-NIOSH or 800/356-4674. Information specialist are available between 9 a.m. and 4 p.m. eastern time. NIOSH has information on carpal tunnel and other workplace environmental hazards and can also assist in arranging worksite evaluations for potential safety or occupational hazards. Publicatiions: National Institute for Occupational Safety and Health. (1989). Carpal tunnel syndrome: selected references. Cincinnati, Ohio: U.S. Dept. of Health and Human Services, Public Health Service, Centers for Disease Control, National Institute for Occupational Safety and Health, Division of Standards Development and Technology Transfer. Publications from other sources: Kiell, M. (1989). Come To Grips With Carpal Tunnel. Safety and Health, 139(5), 52. Ricks, T. W. (1992). What, exactly, is carpal tunnel syndrome? College and Research Libraries News, 53(3), 164. Schafer, J. C. (1993). When Your Job's A Pain in the Hand. The Secretary, 53(3), 16. Last updated: August 1994 ---------- What resources are available to help me learn about chronic fatigue syndrome? A bibliography of books. (1994). Chronic fatigue syndrome. New York: Marcel Dekker. 461 p. Murray, M. T. (1994). Chronic fatigue syndrome: How you can benefit from diet, vitamins, minerals, herbs, exercise, and other natural methods. Rocklin, CA: Prima. 196 p. Culbert, M. L. (1993). CFS: Conquering the crippler. The nature and management of chronic fatigue syndrome. San Diego: C & C Communications. 197 p. Duff, K. (1993). The alchemy of illness. New York: Bell Tower. 159 p. Schmidt, M. A. (1994). Tired of being tired: Overcoming chronic fatigue and low vitality. Berekley, CA: Frog. Kenny, T. (1994). Living with chronic fatigue syndrome: A personal story of the struggle for recovery. New York: Thunder's Mouth Press. 228 p. Hale, M. (1994). The chronic fatigue syndrome cookbook: Delicious and wellness-enhancing recipes created especially for CFS sufferers. New York: Carol Publishing Group. 218 p. Poesnecker, G. E. (1993). Chronic fatigue unmasked: What you and your doctor should know about the adrenal syndrome, today's most misunderstood, mistreated, and ignored health problem (2nd ed.). Richlandtown, PA: Humanitarian. Bell, D. S. (1994). The doctor's guide to chronic fatigue syndrome: Understanding, treating, and living with CFIDS. Reading, MA: Addison-Wesley. 275 p. (1993). Chronic fatigue and related immune deficiency syndromes. Washington, DC: American Psychiatric Press. 168 p. Feiden, K. (1992). Hope and help for chronic fatigue syndrome: The official guide of the CFS/CFIDS network. New York: Simon & Schuster. 216 p. Lind-Kyle, P. (1992). When sleeping beauty wakes up: A woman's tale of healing the immune system and awakening the feminine. Portland, OR: Swan/Raven. 245 p. (1993). Chronic fatigue syndrome. New York: Wiley. 357 p. Ford, N. D. (1993). 18 natural ways to beat chronic tiredness. New Canaan, CT: Keats. 254 p. Bell, D. S. Curing fatigue: A step-by-step plan to uncover and eliminate the causes of chronic fatigue. Emmaus, PA: Rodale. 276 p. Hoffman, R. L. (1993). Tired all the time: How to regain your lost energy. New York: Poseidon. 256 p. Collinge, W. (1993). Recovering from chronic fatigue syndrome: A guide to self-empowerment. New York: Body Press/Perigee. 240 p. Gordon, N. F. (1993). Chronic fatigue: Your complete exercise guide. Champaign, IL: Human Kinetics. 130 p. Crook, W. G. (1992). Chronic Fatigue Syndrome and the yeast connection: A get-well guide for people with this often misunderstood illness--and those who care for them. Jackson, TN: Professional Books. 386 p. Ostrom, N. (1993). 50 things you should know about the chronic fatigue syndrome epidemic. New York: St. Martin's Press. 151 p. Rosenbaum, M. E. (1992). Solving the puzzle of chronic fatigue syndrome. Tacoma, WA: Life Sciences Press. 171 p. Last updated: February 1995 ---------- What information is available to help people with disabilities to drive? Assistance in finding adaptive equipment for automobiles and services that improve mobility is available in the following publication: American Automobile Association. (1995). The Disabled Driver's Mobility Guide. Heathrow, FL: American Automobile Association, Traffic Safety and Engineering Department. Cost: $5.95 plus $2.50 shipping and handling. To obtain a copy, contact your local AAA club, or send a check to Kay Hamada, MS76, American Automobile Association, 1000 AAA Drive, Heathrow, FL 32746-5063. Last updated: January 1996 ---------- I have a disability and I want to further my education (or career). What grants, loans, or scholarships are available? Generally speaking, scholarships are not awarded based soley on a disability. Many universities have Disabled Student Service Offices that help students with on-campus accommodations, but most educational loans and scholarships are based on need. Financial aid may be awarded only after a comparison between the Cost of Attending a University (COA) and the family's Family Resources (FR assessment--the ability to pay for the education) is performed. Organizational Resources: Reference Service Press: 1100 Industrial Road, Suite #9, San Carlos, CA 94070. 415/594-0743. RSP publishes directories and other materials regarding the availability of scholarships, fellowships, loans, grants, awards, and internships--comprehensive financial aid information in the areas of educational or personal development. The U.S. Department of Education, Office of Post Secondary Education (OPE), maintains a website (http://www.ed.gov/offices/OPE) listing several important resources that may assist students in pursuing their postsecondary education including: - An overview of major OPE organizations, - The Student Guide to Federal Financial Aid Programs, - Information on the Free Application for Federal Student Aid (FAFSA), including an online version of the form, - A listing of all state guaranty agencies, - A listing of state agencies that can provide information on state-sponsored grants, and - Information on FIPSE, which provides funds to institutions to help them improve the quality of postsecondary education. The U.S. Department of Education, Rehabilitation Services Administration (RSA) provides funding for training and education in rehabilitation for individuals wishing to pursue careers in rehabilitation. Universities compete for these rehabilitation training grants, and RSA awards them to the universities submitting the best proposals. Then specific programs at the university award grant monies to specific students. Criteria for receiving grant monies are established by the universities. For information on which universities have received RSA training grant monies, contact Dr. Sylvia Johnson of RSA, at 202/205-9312. Ask to receive a free copy of the publication entitled Catalogue of Projects Under RSA's Training Program. For information on the availability of sign-language interpreter training grants or other grants in the area of deafness, contact Charlotte Coffield of RSA, at 202/-205-9001. Ask to receive the publication Title III: Sign Language Training Coordinator. State Vocational Rehabilitation Agencies or Client Assistance Programs: In certain cases, eligible people with disabilities can obtain tuition or book assistance through the State Vocational Rehabilitation Agency (SVRA). The goal of obtaining a post-secondary education, and resources needed to accomplish it, must be spelled out in the Individualized Written Rehabilitation Program. SVRA may provide tuition assistance only after other traditional student loan programs have been explored. Plans for the Achievement of Self Support (PASS) Individuals qualifying for SSI, or in some cases SSDI, may wish to contact their local Social Security Office. Those calling 800/772-1213 will be referred to the nearest Social Security Office, from which they can ask for the Social Security publication Working While Disabled: A Guide to Plans for the Achievement of Self-Support (PASS). U.S. Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR, the agency that funds NARIC): For information on current grants funded by NIDRR, call the NIDRR grant information line at 202/205-8207. In order to be put on the mailing list to receive the NIDRR Directory of currently funded grants and contracts, contact NARIC. The Foundation Center. 79 Fifth Avenue, New York, NY 10003-3076. 800/424-9836. URL: http://fdncenter.org. The Foundation Center is an independent national service organization established by foundations to provide an authoritative source of information on private philanthropic giving. Staff provide information on various funding resource materials published by the Center, and can direct patrons to cooperating collections in the patron's local area. Books Related to Funding and Education. Check your library for the following titles. Foundation Center (1995). Grants to individuals. (9th Ed.). New York: Author. Available from the Foundation Center, 79 Fifth Avenue, New York, NY 10003-3076. 800/424-9836. Cost: $65. The all-new 9th Edition of this publication features more than 2,600 foundation entries. Grant seekers will find current information on application procedures for foundation grants in: educational support (scholarships, fellowships, loans, and research), general welfare, arts and cultural support, awards, prizes, and grants by nomination, international applicants, etc. Schlachter, G., & Weber D. R. (1992). Financial aid for the disabled and their families, 1992-1994. Redwood City, CA: Reference Service Press. Price: $37.50 plus $4 shipping and handling. Available from 1100 Industrial Road, Suite 9, San Carlos, CA 94070. 415/594-0743. Fax: 415/594-0411. Schlachter, G. (1992). How to find out about financial aid. Redwood City, CA: Reference Service Press. Price: $35 plus $4 shipping and handling. Available from 1100 Industrial Road, Suite 9, San Carlos, CA 94070. 415/594-0743. Fax: 415/594-0411. Schlachter, G., & Weber, D. (1992). Financial aid for research and creative activities abroad: 1992-1994. San Carlos, CA: Reference Service Press. Available from 1100 Industrial Road, Suite 9, San Carlos, CA 94070. 415/594-0743. Fax: 415/594-0411. Cassidy, D. J. (1995). Worldwide college scholarship directory (4th ed.). Franklin Lakes, NJ: Career Press. 249 p. Peterson's Guides (1995). Peterson's paying less for college (13th ed.). Princeton, NJ: Author. 690 p. Jaszczak, S. (Ed.). (1995). Scholarships, fellowships, and loans 1996: A guide to education-related financial aid programs for students and professionals (11th ed.). Detroit, MI: Gale Research. 1290 p. Olson, E. A. (1995). Dollars for college: The quick guide to financial aid for business and related fields: Scholarships, fellowships, loans, and other programs. Garrett Park, MD: Garrett Park Press. Olson, E. A. (1995). Dollars for college: The quick guide to financial aid for the liberal arts, humanities, and social science: Scholarships, fellowships, loans, other programs. Garrett Park, MD: Garrett Park Press. . Footnotes: 1) Information obtained from a personal communication (Wednesday February 9, 1994) between Bill Schutz of NARIC and Dr. Richard Melia, Title III Grants Coordinator, of the U.S. Department of Education, Rehabilitation Services Administration. 2) ibid. Last updated: January 1996 ---------- What are Independent Living Centers (ILCs) and what services do they provide? ILCs are funded under Title VII, Part B, of the Rehabilitation Act of 1973. ILCs are run by and for people with disabilities and serve all disability groups. All ILC's are committed to promoting consumer-control of choices related to various independent living issues. All ILCs provide six basic core services: (1) peer counseling, (2) independent living skills, (3) housing, (4) information and referral, (5) advocacy, and (6) personal assistance services. 1) Peer Counseling. Support groups run by the Peer Counseling Program Coordinator allow people with disabilities to share experiences related to living with a disability. These shared experiences provide strength and encouragement to group members. 2) Independent Living Skills Training. Skills training focuses on travel, e.g., how to access and use private or public transportation services; money management, e.g., how to pay bills and manage financial resources; and benefits assistance, e.g., assistance in filing and appealing for various disability services like Supplemental Security Income. 3) Housing. ILC staff work with consumers and local housing authorities to ensure that people with disabilities receive accessible and affordable housing in their local communities. 4) Information and Referral. When ILCs cannot provide a needed service to a person with a disability, ILC staff make every effort to identify and connect the person to appropriate agencies in the local area. 5) Advocacy. ILC staff teach people with disabilities how to access and navigate the social service delivery system. 6) Personal Assistance Services. Personal assistants work on a one-to-one basis with the person with a disability, providing various assistant services-depending on the type of assistance requested; such activities often include cleaning, laundry, and shopping. The Personal Assistance Services Coordinator works with consumers to train them how to hire and supervise an assistant; a good way to think of these services is as the hired "arms and legs" of, but not the brain of, a person with a disability. Some centers offer additional services to specific target populations. For example, the Washington, DC Center for Independent Living has an outreach program for Hispanics with disabilities. Locating an ILC in your area The Independent Living Research Utilization Project on Independent Living in Houston, TX, at 713/520-0232, can send consumers a current listing of all ILCs across the country. The Case Management Resource Guide, available at libraries or by calling NARIC, has a section on Independent Living Centers. Last updated: March 1994 ---------- Where can I get information about National Rehabilitation Week? National Rehabilitation Week occurs in the summer and is sponsored by Allied Services of Scranton, PA. The 1996 "week" was August 16-25, during which a promotional program focused attention on the history and future of rehabilitation. For information on the next National Rehab Week, call Allied Services at 717/348-1300. Last updated: August 1996 ---------- I've heard that I should investigate Vocational Rehabilitation. What can they do for me? The primary goal of State VR agencies is to help people with disabilities attain or maintain satisfactory employment. VR agencies do this through specific services such as counseling, guidance, job training, and placement. A VR counselor will help you determine appropriate services needed to attain your agreed upon job goal. Depending on the availability of funding and the contents of the State Plan for your state, your VR agency may offer services including physical restoration (medical services necessary to correct a condition which is stable or slowly progressive); training; maintenance; transportation; placement; provision of tools, equipment, and licenses; establishment of and management services for small business enterprises; and other goods and services necessary to render a person with a disability fit to engage in a gainful occupation (Wright, 1980; McGowan & Porter, 1967). Many rehabilitation agencies provide clients with educational assistance, including help with tuition, books, and supplies for vocational, technical, or academic education, physical assistance in studying or working to enable one to be competitive with students and workers without disabilities, and durable medical equipment, including recent high tech innovations (Bradford, 1991). Sources McGowan, J. F.; Porter, T. L. (1967). Introduction to the vocational rehabilitation process: A training manual. NARIC Accession number: X02896. Provides basic training materials for orientation of new counselors in a state agency. Wright, G. N. (1980). Total rehabilitation. Boston: Little Brown. NARIC Accession number: R00610. Covers the total process of rehabilitation through vocational and life adjustment services for people with disabilities or people who are disadvantaged. Last updated: June 1994 The NARIC Answer Queue is for informational purposes only, and should not replace professional consultation