LISTSERV 16.0 - PARKINSN Archives

Date: Sat, 20 Jan 1996 12:39:05 -0800
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From: [log in to unmask] (Richard W. Fee- San Francisco, USA)
Subject: NILP Online News - January, 1996
Cc: [log in to unmask]
 
NILP OnLine News
 
National Institute on Life Planning for Persons with Disabilities, Inc.
CIHS-Sonoma State University, 1801 E. Cotati Ave.,      Rohnert Park, CA
94928-6922  Home Page:    http://sonic.net/nilp    E-Mail:
mailto:[log in to unmask]
 
January, 1996                              Volume I, No. 3
 
Net News
        Here's today's project!
 
                   First, print off this e-mail message so you can refer to it.
 
        Go onto the Net! Find the URL  http://sonic.net/nilp.  Take your time. I
can wait a minute.
 
        Okay, you are now  in front of the computer with it tuned to the NILP Home
Page. Notice the new  colors, upgraded menus and even the new  counter. Now,
let's take a few minutes and Surf!
 
        1. Database -  Go to the Database section in the menu. Click onto Database.
You are now in the professional database. We have two listings. First, look
for a professional under the II. Geographical Areas. If you live in
Cleveland, Ohio or Northern Ohio and you would like some assistance, simply
press on the names of John and Carol Culley. Up pops an e-mail screen.  At
this point, all you have to do is type in some information, i.e. We have 17
year old son who has Down Syndrome. We would like  some help in planning for
his future. Please call us on 555-1234 between 7pm and 10pm. We live in
Parma.  Thanks. Joe and Mary Doe.  Now, here  is the hard part. Click SEND.
The message goes directly to John and Carol within seconds. When they see
your e-mail message in their computer, they will call you between 7pm and
10pm and explain how they can help. If there is no professional in your
area, then you click on the General Database and send a message to our main
office. We will check our files for other professionals who may be in your
area and e-mail you this information.
 
        We really do need your help here. If you know of any professional we should
include in our special database, please let us know. Fax  or e-mail us their
name, address, telephone, fax and e-mail address. They need an e-mail
address. Please provide a brief summary of professional experience
.
        Now, press BACK at the top of your screen and go back to the main menu.
 
        2. Q&A - One of the main goals of the Institute is to provide information
on all aspects of Life Planning to persons with disabilities, families and
professionals.  We are doing this in a number of ways.  We will look at the
two key methods.
 
Okay, now click onto the Question and Answers section.  This will take you
to the Q&A menu. Let's say that you are concerned about your SSI and
Medicaid benefits(who wouldn't be right now). Click onto the Government and
Community Benefit section.  This takes us to a page that gives us a brief
overview of the benefit system AND lo and behold, a method of asking
personal questions of a true expert. So, we click onto Daniel Scarborough's
name and another e-mail screen pops up.  We then type in all the gory
details and a fervent plea for some sane advice. Then again, the hard part,
press SEND. And within seconds,the message goes directly to Daniel at the
University of Texas. When he checks his e-mail, he types in an answer which
solves all of your problems and he hits the SEND button. The private and
confidential answer goes directly back to you.  The same concept applies to
all of the other Q&A sections. It becomes a little more involved when you
hit the legal section(surprise) because the laws change in each state. Here
you will notice we have the general questions and then the names of  lawyers
in geographical areas. So if you are in Southern California, you press on
the name of Patricia Williams, JD and leave your e-mail question.
 
        Now, press the BACK button at the top of the screen and go back to the Main
Menu again.
 
        3. Listserv/Newsgroup-We realize that Life Planning involves more than just
asking a few technical questions of the experts. You need a place where you
can share ideas and discuss common problems. Waa laa(I really don't know how
to spell - Waa Laa). We have introduced a private Listserv/Newsgroups called
LifePlanning-List.  For you  novices, this is a pretty  neat tool. Once we
get you subscribed - free - than you can send one e-mail note which will go
to between 50 and 1,000 people.  These interested parties can comment and
either send it to the entire group with one key stroke or send it to you
personally. The listserv group is not limited to one locale or even country,
so you may get ideas and advice from experts around the world.
 
This is how  to subscribe:
1. Go to your e-mail program.
2. Click the button to send a NEW message.
3. TO: [log in to unmask]
4. Message: subscribe  lifeplanning-list your e-mail address.  Example:
subscribe  lifeplanning-list  [log in to unmask]
5. Hit SEND
        Wait a few minutes and check your mail. There will be a message on how  to
"post" messages. We hope that this will help everyone share valuable
information.
        4. Links- All good home pages list links to other home pages which can give
you additional information.  At the menu, you will see we have 2 types of
links. The first goes  to a General list which is made up of organizations
that provide overall service and information which may assist someone in
life planning. The second link goes to a page where you can choose the
disability of interest, press on the related organization(s) and get help on
specific disabling conditions.  Try  each one.
 
        Well, that is enough for one day. When you check your e-mail tomorrow, go
to the NILP Home Page(make sure you make a bookmark).  Then check out all
the sections.
 
ChLAP Guarantee
        When the time comes to do your special planning or recommend someone to do
the planning, ask your professional about his or her qualifications. You can
rest assured that those professionals who have completed the ChLAP program
know their "stuff" and have subscribed to a strict code of ethics. The ChLAP
logo is important. The ChLAP logo in combination with the  words "Fellow" or
"Member" of NILP indicate the professional also receives the latest life
planning information from NILP.
 
Next Training Program
        The next ChLAP examinations will be held on Saturday, May 4th in San
Francisco. The pre-examination schools will go from  Thursday, May 2nd at
1pm until the Saturday exam at 3pm.  This Saturday exam will help you access
cheap weekend fares and enjoy an extra day or two in San Francisco and/or
Napa Valley.
 
        For more information about enrolling the ChLAP program and the next series
of pre-examination schools, please call us on 707-664-4235 or by the modern
e-mail method on [log in to unmask]
 
1996 NATIONAL CONFERENCES
 
January
16th-20th National Association of Private Schools for Exceptional Children,
Captiva Island, FL, Mara Miller,  202-408-3338  Fax 202-408-3340
February
 
March
6th-9th Learning Disabilities Association of America, Dallas, TX, Jean
Petersen, Fax 412-344-0224
 
19th-23rd CSUN  11th Annual Technology Conference, Harry Murphy,
818-885-2578, Fax 818-885-4929, E-mail: [log in to unmask]
 
26th-28th Arc Governmental Affairs Seminar, Washington, DC, 1-800-433-5255
 
29th-31st National Ataxia Foundation, Little Rock, AR,  Cheryl Harrison
612-473-7666, Fax 612-473-9289
 
29th-April 1st  International Parent to Parent Conference, Albuquerque, NM
Betsy Santelli, 800-564-4772  E-mail:  [log in to unmask]
 
April
17th-20th 7th Biennial Conference on Postsecondary Education for Persons who
are Deaf or HH, Knoxville, TN, Marcia Kolvitz  423-974-8427 TTY 423-974-3522
E-Mail [log in to unmask]
 
TBA - Council for Exceptional Children
 
 
May
16th-19th  National Academy of Elder Law Attorneys, Cambridge, MA.
520-881-4005 Fax  520-325-7925
 
24th-27th International Rett Syndrome 12th Conference, Boston, MA  Cathy
Hunter, 301-856-3336
 
May 28-June 1st - American Association on Mental Retardation, San Antonio,
TX,  Paula Hirt, 1-800-424-3688
 
June
13th-16th Society for Disability Studies, Washington, DC Adrienne Asch
617-283-3248 Fax 617-283-3671
 
19th-21st  Spina Bifida Association of America, Phoenix, AZ,  Roberta Carlin
202-944-3285  Fax 202-944-3295
 
27th-29th National Down Syndrome Society, Phoenix, AZ  800-221-4602  Fax
212-979-2873
 
July
1st-7th National Association of the Deaf, Portland, OR  Deborah Jacobs,
301-587-1789 TTY 301-587-1789 Fax 301-587-1791
 
9th-12th 7th Annual Association for Persons in Supported Employment(APSE),
New Orleans, LA  804-278-9187
 
5th-9th National Alliance for the Mentally Ill, Nashville, TN, Connie
Schantz, 703-524-7600
 
10-13th Autism Society of America, Milwaukee, WI, 414-427-9345 Fax 414-427-9395
 
11th-13th  Osteogenesis Imperfecta Foundation, Orlando, FL  Leanna Jackson,
813-282-1161
 e-mail: [log in to unmask]
 
18th-20th  Prader-Willi Syndrome Conference, St Louis, MO, Russ Myler
800-926-4797
 
26th-28th National Down Syndrome Congress, Miami Beach, FL, 800-232-6372
Fax 404-633-2817
 
26th-29th Williams Syndrome Association  Valley Forge, PA  Terry Monkaba
810-541-3630 Fax 810-541-3631  E-mail: [log in to unmask]
 
August
6th-11th  National Fragile X Foundation  Portland, OR, David Mommener,
303-333-6155 Fax 303-333-4369
 
9th-11th Sotos Syndrome Support Association, Santa Barbara, CA Patty and
Michel Charest, 805-683-1614
 
September
5th-8th National Rehabilitation Association, Norfolk, VA, Carol Jafarr,
703-836-0850 Fax  703-836-0848
 
19th-21st - Trial Lawyers - Brain Injury Association, Inc, Palm Beach, FL,
Elizabeth Rouse, 202-296-6443  Fax 202-296-8850
 
October
7th-9th National Guardianship Association, Detroit, MI, Joan Grey
616-387-4174  Fax 616-387-4189
 
14th-16th Conference on Aging and Developmental Disabilities, Lexington, KY,
James Stone  606-273-9656 E-mail: [log in to unmask]
 
17th-21st  American Association of University Affiliated Programs for
Persons with Developmental Disabilities. Washington, D.C.  Theresa Hosinski,
301-588-8252  Fax 301-588-2842.
 
November
3rd-6th Brain Injury Association, Dallas, TX  Elizabeth Rouse, 202-296-6443
Fax 202-296-8850
 
6th-8th  Arc National Convention, Louisville, KY,  1-800-433-5255
21st-23rd  TASH, New Orleans, LA  410-828-8274  Fax 410-828-6706
 
December
 
We welcome your membership in the NILP. Fax or E-mail for application forms
Published monthly by the National Institute on Life Planning for Persons
with Disabilities, Inc. CIHS-Sonoma State University, 1801 E. Cotati Ave,
Rohnert Park, CA. 94928-6922   Fax 707-762-2657 E-Mail: [log in to unmask]