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Date: Wed, 14 Feb 1996 12:37:30 -0800
From: "Richard W. Fee" <[log in to unmask]>
Organization: National Institute on Life Planning for Persons with Disabilities
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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
________________________________________________________________________        Februar
 y, 1996                                                 Volume I, No. 4
 
Government Benefits and Your Future...
        Everyone occassionally wakes up from a bad dream  at 3 o'clock in
the morning.  There is always some worry that suddenly becomes
overwhelming and it usually happens at 3am.  My worry surfaced this
morning. For the last year, Congress and the President have wrestled with
ways to streamline government, reduce the deficit, balance the budget,
etc. It would appear that with the recent blessing from the Governors
conference, block grants for benefits will probably become a reality in
the future. This means in the simpest terms that the government will give
the states some money based on a formula usually population and tell them
to  go for it. They may also mandate guidelines, however, the Governors
were not keen on this concept. What is going to happen?
        At the present time, the maximum SSI assistance is roughly
two-thirds of  the poverty income  level.  Families generally help bring
the person with the disability up to a reasonable standard of living.  In
my 28 years in this field, I have never seen the government agencies make
the application process anything other than a very difficult one. The
whole process is insulting and degrading. We are not talking about
helping those who are trying to cheat the system. We are talking about
those who because of a disabling condition or society's and businesses'
attitudes towards them cannot earn survival wages.  There are very few
people who can live on less than $500 a month.  If they live in a group
home facility that generous government allowance for personal needs goes
does to $30-40 a month. As a society  we, consciously or unconsciously,
not only devalue persons with disabilities, but we also humiliate them by
throwing a few  token crumbs of financial assistance.
        Persons with disabilities receive a basic income from the
government through the SSI and SSDI programs. Those fortunate to have
strong family support system may do "okay" while it exists. As these
persons get older and the family support dwindles down to nothing(death),
they must rely on the charities to bridge the gap. With the block grant
method of distributing the funds, the states will decide how it will be
spent(Not to pick on Oregon, but their system of rationing/prioritizing
healthcare scares many people with disabilities).  It seems that the
present Congress feels that we need to get back to the "traditional"
values where people all pitch in and help one another.  I would venture
to guess that we are already pitching in a great deal now. Charities will
some how  be overwhelmed with new contributions(right!).  My concern is
based on what I saw growing up in the 50's and 60's. Many states who
receive the largest federal assistance continue to have the worst social
service structures.  We know that not all states distribute the funds
properly. Even with the current federal mandates and distribution system,
there are states that provide worse services than third world countries.
 With no real federal oversight, you will see major lawsuits concenring
quality care and a  massive re-distribution of persons with disabilities
and their families to the more enlightened states.
        I suppose the key question(the 3am worry) that every person with
a disability has to ask right now is - How will I be able to live a
comfortable life without a good government benefit program and the
support of my family?  Can I rely on the local charities to make up the
difference when I family is gone?  Will the state government supplement
the federal block grant subsidy? From what I know of my current state
government, will the federal block grant funds wind up in my pocket or in
the new roads, prisions, government official's salaries, etc. ? Think
about it. Think about it real hard! Plan for a future without the
government benefit program.
***********************************************************************
NILP WELCOMES YOUR MEMBERSHIP- FOR MORE DETAILS, CHECK HOME PAGE ON
http://sonic.net/nilp  OR E-MAIL [log in to unmask]
***********************************************************************
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.
 
ChLAP Training Program - IF YOU ARE REALLY SERIOUS ABOUT HELPING PEOPLE
PLAN FOR THE FUTURE
 
        The ChLAP program is a correspondence study program made up of 3
courses- Social, Legal and FInancial Aspects of Lifetime Assistance
Planning. It leads to the professional designation of ChLAP or Chartered
Lifetime Assistance Planner. This special program prepares professionals
for working with persons with disabilities and their families in planning
for the future.  Each course requires satisfactory completion of a major
project and final examination. It is a fairly new program. In the first 6
months, over 50 professionals completed the designation.  Details about
the program can be found on the NILP Web page:  http://sonic.net/nilp.
        We recently instituted some major changes based on our experience
to date.  The first is in the tuition area. We reduced the basic tuition
for each module to $975 with a 10% discount if you work for a non-profit
organization.  We offer a pre-examination school for each course which
lasts 3 days.  Most professionals simply take the final examination
without the school. The tuition for the school includes lunches, breaks,
materials, etc. is $295.  They are held four times a year in San
Francisco(minimum of 15 students).
        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]
 
*************************************************************************YOUR NI
 LP MEMBERSHIP IS WELCOME. FOR MORE DETAILS, PLEASE CHECK HOME PAGE
AT  http://sonic.net/nilp  OR E-MAIL [log in to unmask]
*************************************************************************
                        1996 NATIONAL CONFERENCES
March
6th-9th Learning Disabilities Association of America, Dallas, TX, Jean
Petersen, Fax 412-344-0224
15-17th  Disabled, But Enabled and Empowered., SUNY, Rochester, NY, David
DuBois, 716-244-3884 x.123 E-Mail:[log in to unmask]
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
May 29 - June 1st - 19th Annual NAPAS Conference- P&A/CAP Training,
Washington,DC, 202-408-9514, Fax 202-408-9520  E-Mail:
[log in to unmask]
 
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]