FYI: Information Resources From Nichcy'S Database

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The following information was selected from numerous resources abstracted in NICHCY's database. If you know of a group that provides information or services about estate planning to families, professionals, or the general public, please send this information to NICHCY for our resource collection and database. We would appreciate this information and will share it with others who request it.

You can obtain many of the documents listed below through your local library. Whenever possible, we have included the publisher's address or some other source in case the publication is not available in your area. It is a good idea to contact the publisher or organization and obtain the latest information on ordering, payment procedures, and shipping and handling charges. The prices listed are, of course, subject to change without prior notice.

The organizations listed are only a few of the many that provide various services and information about estate planning to families and professionals. Additional publications and information may also be available from state and local parent groups and state and local affiliates of many disability organizations. Please note that the addresses and telephone numbers are subject to change without prior notice.

If you experience difficulty in locating these documents or organizations, or if you would like additional assistance, please contact NICHCY. Finally, you may find NICHCY's State Resource Sheet for your state or territory helpful in contacting other resources of information.

Print Resources

Apolloni, T., & Cooke, T.P. (Eds.). (1984). A new look at guardianship: Protective services that support personalized living. Baltimore, MD: Paul H. Brookes. (Available from California Institute on Human Services, Sonoma State University, Rohnert Park, CA 94928. Telephone: (707) 664-2416.)

Arc-Beaver County. (1989). A guide to estate planning for the mentally retarded. Monaca, PA: Author. (Available from the Arc-Beaver County, 1260 North Broadhead Road, Suite 103, Monaca, PA 15061. Telephone: (412) 775-1602.)

Arc-California. (1990). Guardianship, conservatorship, trusts and wills for families with mentally retarded or other disabled family members (4th ed.). Sacramento, CA: Author. (Available from the Arc-California, 120 I Street, 2nd Floor, Sacramento, CA 95814-2213. Telephone: (916) 552-6619.)

Arc-Indiana. (1988). Future planning: Decisions by choice, not chance: An asset planning workbook for parents with a disabled child. Indianapolis, IN: Author. (Available from the Arc-Indiana, 22 E. Washington Street, Suite 210, Indianapolis, IN 46204. Telephone: Outside of IN, call (317) 632-4387. Within IN, call (800) 382-9100.)

Arc-Michigan. (1989). Supplemental Security Income/Social Security disability: An advocate's manual. Lansing, MI: Author. (Available from the Arc-Michigan, 333 South Washington Square, Suite 200, Lansing, MI 48933. Telephone: (517) 487-5426.)

Arc-Oregon. (1990). Future planning on behalf of people with developmental disabilities: A guide for estate planners. Salem, Oregon: Author. (Available from the Guardianship, Advocacy, and Planning Services (GAPS), The Arc of Oregon, 1745 State Street, Salem, OR 97301. Telephone: (503) 581-2726.)

Berkopin, R. (1991, September). A family handbook on future planning. Arlington, TX: The Arc. (Available from the Arc, National Headquarters, 500 E. Border Street, Suite 300, Arlington, TX 76010. Telephone: (817) 261-6003. Ask for Publication No. 10-2.)

Boggs, E., & Arc-United States Insurance Company. (1989). How to provide for their future. Arlington, TX: The Arc. (Available from the Arc, National Headquarters, 500 E. Border Street, Suite 300, Arlington, TX 76010. Telephone: (817) 261-6003. Ask for Publication No. 10-1.)

Fee, R.W. (1990, Fall). The life planning approach. New Ways, 18-19.

Fee, R.W., Jarrett, R., & Poulos, C. (1990, July). Securing the future for the autistic person. Proceedings, Autism Society of America annual conference, Buena Park, CA. (Available free of charge from Autism Society of America, 7910 Woodmont Avenue, Suite 650, Bethesda, MD 20814. Telephone: (301) 657-0881; 1-800-3-AUTISM.)

Foundation for the Handicapped. (1988). Future planning guide for parents and families of persons with disabilities. Seattle, WA: Author. (Available from the Foundation for the Handicapped, 1550 West Armory Way, Suite 205, Seattle, WA 98119. Telephone: (206) 283-4520.)

Hartley, S.C., Stewart, J.T., & Tesch, M. (1985). Estate planning for families of persons with developmental disabilities. Raleigh, NC: Arc/North Carolina, Inc. (Available from the Arc-North Carolina, Inc., P.O. Box 20545, Raleigh, NC 27619. Telephone: (919) 782-4632.)

Hartley, S.C., & Stewart, J.T. (1987). The professional's guide to estate planning for families of individuals with developmental disabilities. Raleigh, NC: Arc/North Carolina, Inc. (Available from the Arc-North Carolina, Inc., P.O. Box 20545, Raleigh, NC 27619. Telephone: (919) 782-4632.)

Holdren, D.P. (1985). Financial planning for the handicapped. Springfield, IL: Charles C. Thomas. (Available from Charles C. Thomas Publishers, 2600 S. First Street, Springfield, IL 62794-9265. Telephone: (217) 789-8980..)

I'm not going to be John's baby sitter forever: Siblings, planning and the disabled child. (1987, November-December). Exceptional Parent, 60-64.

Little, J. (1991). Take me to your lawyer. Pleasant Valley, New York: Alliance for the Mentally Ill of New York State, Inc. (Available from NYS/AMI Packet, Box 68, RR 5, Pleasant Valley, NY 12569. Telephone: (914) 635-8114.)

Russell, L.M. (1990, Fall). Writing the Letter of Intent. New Ways, 20-25.

Russell, L.M., Grant, A., Joseph, S., & Fee, R. (1994). Planning for the future: Providing a meaningful life for a child with a disability after your death. Evanston, IL: American Publishing. (Available from American Publishing Company, 814 South Blvd., Evanston, IL 60202. Telephone: (800) 247-6553.)

Turnbull, H.R., Turnbull, A.P., Bronicki, G.J., Summers, J.A., & Roeder-Gordon, C. (1988). Disability and the family: A guide to decisions for adulthood. Baltimore, MD: Paul H. Brookes. (Available from Paul H. Brookes Publishing Company, P.O. Box 10624, Baltimore, MD 21285-0624. Telephone: 1-800-638-3775.)

Organizational Resources

Here is a listing of selected national organizations that can provide information, publications, brochures, or referral about estate planning. Many of these organizations focus upon a specific disability or disabilities and have affiliates at the state or local level. The affiliates may have publications specific to the laws of the state and may be able to refer families to local financial planners and attorneys specializing in estate planning when a son or daughter with a disability is involved. Call the national office to find out what information they have available on estate planning, as well as what affiliates exist in your state or locality.

The Arc (formerly the Association for Retarded Citizens) - National Headquarters, 500 E. Border Street, Arlington, TX 76010. Telephone: (817) 261-6003.

Association for Persons with Severe Handicaps (TASH) - 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204. Telephone: (410) 828-8274.

Autism Society of America - 7910 Woodmont Avenue, Suite 650, Bethesda, MD 20814. Telephone: (301) 657-0881; 1-800-3-AUTISM.

Brain Injury Association (formerly the National Head Injury Foundation) - 1776 Massachusetts Avenue N.W., Suite 100, DC 20036. Telephone: (202) 296-6443; (800) 444-6443.

Judge David L. Bazelon Center for Mental Health Law - 1101 15th Street N.W., Suite 1212, Washington, 20005. Telephone: (202) 467-5730.

Life Services for the Handicapped, Inc., 352 Park Avenue South, Suite 703, New York, NY 10010. Telephone: (212) 532-6740.

National Alliance for the Mentally Ill (NAMI) - 200 N. Glebe Road, Suite 1015, Arlington, VA 22203-3754. Telephone: (703) 524-7600.

National Down Syndrome Congress - 1605 Chantilly Drive, Suite 250, Atlanta, GA 30324. Telephone: (404) 633-1555; (800) 232-6372 (Toll-free).

National Down Syndrome Society - 666 Broadway, Suite 810, New York, NY 10012. Telephone: (212) 460-9330; (800) 221-4602 (Toll-free).

National Easter Seal Society - 230 West Monroe Street, Chicago, IL 60606. Telephone: (800) 221-6827 (Toll-free); (312) 726-6200; (312) 762-4258 (TT).

National Institute on Life Planning for Persons w/Disabilities: Can be contacted by e-mail at: rfee@sonic.net or via the world wide web at: http://sonic.net/nilp

National Mental Health Association - 1021 Prince Street, Alexandria, VA 22314-2971. Telephone: (800) 969-NMHA.

United Cerebral Palsy Associations, Inc. (UCPA), Community Services Division, 1660 L Street N.W., Suite 700, Washington, DC 20036. Telephone: (202) 842-1266; (800) 872-5827.