PLUK eNews March
29 - April 2, 2004
http://www.pluk.org/eNews/March29_04.htm
Volume 2 Issue 38
New Format!
Welcome to the weekly PLUK eNews!
(Download the printable pdf version at: http://www.pluk.org/eNews/Mar_29_04.pdf
)
We are proud to present news of interest for Montana families of children with disabilities and chronic illnesses, and for the professionals and educators who serve them; however, it does not constitute an endorsement.
"The human spirit is your specifically human dimension and contains abilities other creatures do not have. Every human is spiritual; in fact, spirit is the essence of being human. You have a body that may become ill; you have a psyche that may become disturbed. But the spirit is what you are. It is your healthy core." Joseph Fabry
Highlights: (click on title to go to story)
PLUK Sponsors Full-Day Assistive Technology Seminars in
Billings and Kalispell in May
Visit http://www.pluk.org/ATconf.htm
for details.
May 12 - Billings, May 19 - Kalispell
This full-day seminar offers a unique opportunity to gain valuable information
on the topic of assistive technology. The two morning sessions will cover the
basic information of technology and the law and how to make technology
decisions. The afternoon sessions will cover specific strategies, devices,
resources and what may be expected in the future. Topics to be covered include
the following:
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Support the Family Opportunity Act
http://capwiz.com/cek/issues/bills/?bill=1778551
The Family Opportunity Act is likely to be voted on in the Senate in the next
couple of weeks, as an amendment to other legislation. We can get FOA passed,
but we need to take action now!
Please contact your members of Congress and urge them to pass the Family
Opportunity Act. It is especially important to contact Senators Frist, Kennedy
and Grassley, and Representative Pete Sessions. (With respect to Sessions, it
will be particularly helpful to have people contact him from his home district
in the Dallas area.)
A brief summary of the bill, developed by The Arc and UCP Public Policy
Collaboration, follows. More information is available by entering the bill
number of S. 622 (or H.R. 1811) at http://thomas.loc.gov/
S. 622 - FAMILY OPPORTUNITY ACT OF 2003
Too often, low- and modest-income families cannot get the health-related
services and treatment their children with disabilities need through private
insurance plans or even through the State Children's Health Insurance Program
services that can cost a family more than $10,000 a year.
Families are often forced to give up their job, to turn down promotions and
raises, and even more tragic, to give up custody of their child just so their
children can access necessary health care services and supports that are only
available through Medicaid.
The Family Opportunity Act of 2003 (S. 622 - also referred to as the "Dylan
Lee James Act") allows parents to go to work and earn above-poverty level
wages while maintaining health care for their disabled children by purchasing
Medicaid.
S. 622 expands Medicaid options for states by allowing states to offer Medicaid
coverage to children with severe disabilities living in middle income families
through a buy-in program. Cost-sharing on a sliding scale up to a full premium
cost will be required within certain guidelines that protect lower income
families.
In addition to the Medicaid expansion option, the bill also establishes
Family-to-family Health Information Centers to assist and support families of
children with disabilities and/or special health care needs.
Bill Summary:
Swift passage of this legislation will assist families who have children with
severe disabilities.
http://capwiz.com/cek/issues/bills/?bill=1778551
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Schools have to comply with ADA regulations
BY DONNA NEWMAN, SVN NEWS REPORTER, March 21, 2004
There are 12 categories of private entities that, regardless of size, are public
accommodations, subject to Americans with Disabilities Act regulations. Among
those are private schools and even day care centers, according to Title III of
the ADA. The federal government passed the act 14 years ago.
Since 1994, all new construction at schools, public or private, must be
handicapped accessible.
"If I had my way all the old schools would be torn down and all the new
ones would be accessible to everyone," said Carrole Mardis, technical
assistant specialist at Great Lakes ADA Center, University of Illinois at
Chicago. "But I know that's just not feasible."
Read the complete article at: http://www.saukvalley.com/287412415875244.bsp
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TASH Invites Everyone to Support the Right to Communicate!
We would like to invite you to sign-on as a supporter of the Right to
Communicate Resolution at http://www.breaking-the-barriers.org/RTC_Form.htm
The resolution was developed as a result of a series of meetings bringing
together a nationwide group of self-advocates, many of whom have labels of
autism or other disabilities, and who use alternative and augmentative
communication. TASH is pleased to support this group of advocates, who
together with their allies, developed the following vision:
Please spread the word about and take time to visit the Breaking-the-Barriers website http://www.breaking-the-barriers.org
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Federal Resources for Educational Excellence (FREE)
More than 30 Federal agencies formed a working group in 1997 to make hundreds of
federally supported teaching and learning resources easier to find. The result
of that work is the FREE website. http://www.ed.gov/free/
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Thief Steals Man's Arm
By Joseph Hicks
He's known as the "One-Armed Bandit" to fellow golfers, but someone
has made off with his arm. Someone stole his custom-made prosthetic arm.
Larry Alford's arm was recently taken from his Houston area home along with his
SUV and other items.
Alford says it's "pretty serious"-because the arm helps him be an ace
on the course and that's where he gets his green.
The 28-year-old was a promising amateur golfer, but he lost his left arm ten
years ago in a car wreck. Alford has used a specially made prosthetic arm to
play golf and raise money for charity. It was equipped with the mold of a hand
in a golfing grip.
Alford tells a Houston reporter, "If I can get through life overcoming the
loss of my arm, I can get through this."
http://www.enabledonline.com/news
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Region V CSPD Award winners
Region V CSPD (Comprehensive System for Personnel Development) announces award
winners for Paraeducator of the Year Award, Paraeducator-Teacher Team of the
Year Award and YES I CAN Award. These awards will be given at the luncheon
at the Montana Council for Exceptional Children Conference on Friday, April 2,
2004 at the Holiday Inn Grand in Billings.
Region 5 Paraeducator of the Year Award: Kelly Bissett, Victor School
District
Kelly is an outstanding asset both as a paraprofessional in the Victor schools
and as a member of the community; she puts forth her best effort with any
project in which she is involved and completes it with enthusiasm, competence,
and professionalism.
Region 5 Paraeducator/ Teacher Team of the Year Award: Karen Fisher (Para) /
Donna McKinsey (Teacher), Arlee High School
Karen and Donna have shown the students, staff and families in Arlee not only
their expertise, but their unbelievable kindness and candor; one of the most
amazing feats of this team is their love for the students they work with - even
if a student pushes them away, they come back with open arms ready to continue
educating them.
Region 5 YES I CAN AWARD: William Rykowsky, Big Sky High School
William has won the Yes I Can Award for the area of Employment; William has had
several job experiences and was recently hired by Karl Tyler Chevrolet - the
perfect match for a young man who loves cars and an employer who benefits from
William's work ethic. William is really "steering" his own
future!
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Blue Rose Videos With A Voice
http://www.bluerosevideos.com/
This is a unique video rental service designed especially for people with visual
impairments. They currently stock over 150 commercial video titles, all
complete with narratives that describe what other people can see on the screen,
like costumes, facial expressions and actions.
Described videos are the perfect solution for people who love movies and really
want to know what's going on. You no longer have to be limited by the
choices of your branch library, or disappointed by the response of your local
video store. You no longer have to purchase your favorite videos in order
to enjoy them. Blue Rose Videos delivers films to your door!
We carry a wide selection of titles, including dramas, comedies, musicals,
adventures, science fiction, mysteries, and family and children's films.
Our stock is frequently updated to bring you the most currently available
described films.
Membership is a quick and easy process, and you can be watching your favorite
videos within a week.
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Double H offers camping experience to children dependent
on home ventilators
The Double H Hole in the Woods Ranch, a Hole in the Wall Gang associated camp
located in Lake Luzerne, NY, has been providing a summer camp experience for
children with serious and chronic illnesses for 11 years. Children with
cancer, leukemia, hemophilia, HIV/AIDS, sickle cell anemia, neuromuscular
disorders, and other conditions have been able to have a real summer camp
experience swimming, boating, horseback riding, doing arts and crafts, and
participating in the high ropes course.
This June, for the first time, children who are dependent on ventilators for
breathing will be able to enjoy camp at Double H as well. These children
may have had spinal cord injuries, metabolic or mitochondrial disorders, or
tumors, but the common result is that for some or all of every day, they must be
hooked up to a machine to breathe for them. With today's technology and
good nursing care, such children have the expectation of being able to attend
school, and achieve some degree of independence. However, a typical summer
camp experience has been out of the reach for most of them.
The staff from Double H, nurses, doctors and respiratory therapists from the
Pediatric ICU in Albany Medical Center, a local parent of a ventilator dependent
child, and others have been working together for a year to set up the new camp
session, which will be called Camp Inspiration at Double H. For this
session, we are inviting the whole family of the ventilator dependent child:
including parents and siblings. Siblings will participate in the camp
activities together with the affected child. Parents will be spoiled with
special activities, and will be able to network with other parents in the same
situation. At night, the ventilator dependent children will be cared for
in a special cabin staffed by Pediatric ICU nurses and respiratory
therapists. This staff will be with the children all day as well, to
ensure the best possible medical care during all the fun activities.
Applications are now being accepted for all campers, and especially for the
children who are ventilator dependent. The Camp Inspiration session will
be held from June 10th to the 13th . Deadline for the application is April
15, 2004. Applications may be obtained from the camp by calling (518)
696-5676 and asking for the admissions officer. Further information about
Double H can be found on our web site, http://www.DoubleHRanch.org.
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Parent Survey on Alternate Assessments
A University of North Carolina at Charlotte research team is conducting a
national survey for parents of children who have participated in alternate
assessments. They are VERY interested in learning about what parents think
about including their children in accountability testing. Future decisions
about such inclusion must include parent opinion.
They are encouraging parents to voice their opinion through an online survey at http://www.uncc.edu/aap,
click on "Parent Survey" on the bottom right side of the home
page. All responses are confidential/anonymous and there is a prize
drawing to be held in April for $100 worth of books on issues pertinent to
parents of children with disabilities.
Please feel free to contact the research team if you have any questions or
suggestions about this important survey. We appreciate your time and
effort.
Lynn Ahlgrim-Delzell, Project Director
Dept. Counseling, Special Education, & Child Development, 704-687-6023, fax
704-687-2916
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CMS Forum on Medicare & Power Wheelchairs, March 31
CMS is hosting an Open Door Forum on March 31, 2004 at 2:00 p.m. Eastern time to
communicate with beneficiaries, providers, and suppliers about the criteria
Medicare uses to determine whether to pay for a power wheelchair for a
beneficiary.
This forum will permit participants to speak directly to CMS senior staff as
well as DMERC directors about Medicare coverage policy. Instead of just
listening, CMS will hold an open dialogue with interested stakeholders.
There are 2 ways to participate in this Open Door Forum Listening Session, (1)
by phone or (2) "In-person".
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Submissions from College Students with Disabilities
Wanted
The Association on Higher Education And Disability (AHEAD) is soliciting
articles for an anthology about first-year college students with
disabilities. The purpose of the book is to educate prospective college
students with disabilities, parents of students with disabilities, university
personnel, and transition specialists in K-12, through the voices of current and
former college students. The book will focus on two major issues: the
experience of graduating from high school and going to college and life during
the first year of college as a student with a disability. The deadline for
submissions is June 1, 2004. For more information, see the AHEAD web site
at http://www.ahead.org and click on
"call for submissions" in the left column, call 781-788-0003 V/TTY, or
send an email to wendy@ahead.org.
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Training/Workshops/Meetings/Conferences in Montana:: (click on trainings for more information)
http://www.pluk.org/calendar.htm
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Training/Workshops/Conferences outside Montana:: (click on trainings for more information)
http://www.pluk.org/calendar.htm#00
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Art Workshops April 21 & May 5 in Billings
Parents, Let's Unite for Kids (PLUK) is sponsoring two special Art Workshops on
April 21st and May 5th for young people at the Yellowstone Art Museum. The
workshop is being co-sponsored by PLUK and the Yellowstone Art Museum in an
effort to introduce the world of art to children and teens. It's not necessary
that participants have any previous experience, but those with experience are
invited to attend too. It is necessary that parents call PLUK's Office and
pre-register their child to attend, as space is limited and there are a fixed
number of slots for participants. The workshop is open for children from age 6
through the teen years. It should be great fun and an interesting and artistic
experience! The workshop begins at 3:30pm and lasts until 5. Participants should
wear casual clothing. To register or for more information, call PLUK's Office at
255-0540. It is necessary to be registered to attend the session.
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Birthday Time?
Does your child have a birthday coming up? Are you dreading the decorating, food
preparation and cleanup? If so, Contact Bill at Montana Candy Bar & Deli at
294-2327. Montana Candy Bar & Deli offers birthday parties at their store
located at 111South 24th Street West in the Rimrock Mini Mall. They will do the
decorating, provide lunch, ice cream and activities for the kids giving you an
opportunity to sit back, relax and enjoy the party for a change. Be sure to take
your camera for great photo of all the activities. AND PLUK will receive a
portion of the proceeds!
Get your Albertson Community Partners card!
PLUK has joined Albertsons' Community Partners Card Program. This program is
designed to help non-profit organizations raise funds needed for their programs.
A percentage of your grocery total will be donated to PLUK. All that is needed
is to show your Community Partners card each time you make a purchase at
Albertsons. It does not cost you anything. If you are interested in assisting
PLUK in raising funds this way, please contact Bernice at 255-0540 to get a
Community Partners card.
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Parent's, Let's Unite for Kids - PLUK
516 N 32nd St Billings MT 59101-6003
800-222-7585; 406-255-0540; 406-255-0523 (fax)
plukinfo@pluk.org http://www.pluk.org
Edited by: Roger Holt rholt@pluk.org
Proofed & condensed by: Elisabeth Mills scribe@pluk.org
Assisted by: Katie Bonnell bonnell32@msn.com
View an archive of all Weekly eNews at http://www.pluk.org/eNews.htm
Mission Statement: Parent's Let's Unite for Kids unites parents, professionals, families and friends of children with special needs to support one another, and share information for the benefit of their children.
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