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PROGRAM DESCRIPTION
SPIN is co-sponsored by the
Disability & Communication Access Board and the Special Education
Section of the Department of Education. Services include a phone
line for information referral and support, a quarterly newsletter,
an annual conference and community workshops. SPIN is guided
by an Advisory Committee made up of parents, teachers and people
with disabilities.
SPIN
919 Ala Moana Blvd.,
# 101
Honolulu, Hawaii 96814
PHONE
586-8126
Neighbor Islands dial the following exchange then 6-8126: Kauai
-274-3141; Hawai'i-974-4000; Maui-984-2400; Molokai & Lanai
- 1-800-468-4644
FAX
586-8129
E-MAIL
accesshi@aloha.net
WEB
www.spinhawaii.org
PAC
RIM 2005 CONFERENCE
The Pacific Rim 2005 Conference
is set for February 28th and March 1st at the Sheraton Waikiki
and it ought to be a humdinger!
This will be the 21st year that people with disabilities,their
family members, educators and disability professionals from the
Mainland and Pacific get together to learn new ways to support
inclusion and best practice.
Among the keynote speakers are Dr. Siegfried Puesdhel, leading
expert on Down Syndrome and special dad, and Clay Aiken. (Yes,
American Idol fans, the Clay Aiken. Many of you may not know
that Clay graduated with a special education degree from the
University of North Carolina and has helped to put together a
foundation to promote inclusion for individuals with disabilities.
STRANDS
International ,
Secondary, PostsecondarR Education & Employment
Self-Determination,
Health: Mind, Body & Spirit,
Innovative Classrooms
Technologies & Disabilities
Early Childhood
Registration fees are $210
for the two days, if you register by December 31st. Hawaii residents
are entitled to a $50 discount and scholarships are available.
To qualify for a scholarship, you must be a person with a disability,
their family member or relevant person in their life. Interested
persons must submit a short paragraph on how participation in
the conference will benefit you and your community. The deadline
to submit a request for scholarship is December 31st, so you
will need to act fast! For more information, visit the Pacific
Rim 2005 website:
www.pacrim.hawaii.edu/pacrim2005/scholarships
or call or e-mail Martha Guinan at 956-9810 or guinan@hawaii.edu
MARATHON
SKILLS
How often have you faced a
challenge while parenting your child with special needs and told
yourself, "if I can only get through this " or "if
I can change this one thing then life will get back to normal"?
And how often have you experienced the shock and disappointment
of running into the same kinds of problems and issues time and
time again? We approach each new problem as if we are training
for a sprint. Let's get it over with as fast as we can, and then
we'll be done with it.
Our good friend and mentor, Ann Turnbull*, from the Beach Center
on Disability gave some really important advice some years back.
She said instead of training for a sprint, let's begin to learn
some very important marathon skills, which we can use over and
over as we support our child to go the full distance of time.
These marathon skills can not only make us more resilient-more
able to bounce back from challenges-but they can also help us
to find ways to live a good life under our altered set of circumstances.
We've made a list of some of these marathon skills that Ann and
other parents have identified as being really helpful in raising
your child with special needs. Many of our readers have probably
already acquired a number of these skills. We encourage you to
consider the list and see if there are some new skills that might
add to your quality of family life. If you're stumped at how
to become more skillful in a particular area, call or e-mail
us at SPIN, and we can help you to brainstorm possible resources.
We've also listed a few websites that can add to your awareness.
A PARTIAL LISTING...LOVE YOUR
CHILD UNCONDITIONALLY
Of course we all love our children, but we sometimes get hung
up on waiting for "improvements" to be O.K. with who
our child is and will become. Unconditional love means appreciating
and valuing your child NOW-"warts and all." It does
not depend on talent, beauty, acting "normal", or success.
KNOW YOURSELF AND YOUR FAMILY
Finding out what your family needs, values and enjoys is important
for
setting future goals. If you are tuned in to stressors, resources,
and coping strategies, you'll find it easier to avoid some problems
and to solve those problems that do come up.
BUILD A NETWORK OF SUPPORT
and LEARN TO ASK FOR HELP
Feeling isolated and overwhelmed is the darkest part of parenting
a child with special needs. It is crucial that parents learn
to swallow their pride, admit to not being Super Mom or Dad,
and reach out to others to help us with our physical and emotional
needs for support. A healthy support network usually includes
friends, family, neighbors and caring professionals.
BALANCE FAMILY NEEDS
Often the temptation when you have a child with extra needs is
to focus all your time, energy and resources
trying to address those needs. In the long run, it is in your
family's best interest to learn how to fairly distribute attention
and resources amongst all family members. Remember that family
life is a trade-off and keep your guilt to a minimum.
LEARN TO BE FLEXIBLE
One of the first things most parents learn (the hard way) is
that life is all about compromises. By being realistic and flexible,
we can accept that not all solutions will be perfect. Being rigid
sets us up for battle or failure. Remember the palm tree bending
with the wind in the hurricane. It's still standing at the end
of the storm
RECHARGE YOUR BATTERIES
As a primary caregiver, you must find ways to de-stress and regroup
in order to keep giving to your child and family. Getting an
occasional break from caregiving gives you more energy to do
the things you need to do.
DEVELOP YOUR SENSE OF HUMOR
Laughing feels a lot better than crying, and it's a great tension
reducer. Learn to poke fun at yourself and see the humor in situations.
It truly does save your sanity!
ALLOW YOUR CHILD TO TAKE (small)
RISKS
While we want to protect our child from more hurt, we must allow
him or her to take at least little risks in order to learn from
mistakes. That's how you gained your sense of confidence and
competence.
TAKE CHARGE
Find creative solutions. Get involved. Participate. Don't give
up. Take charge of your attitude about your life circumstances.
Practice re-framing a problem situation to focus on positive
benefits and gain a sense of control over your life.
WEBSITES THAT TALK MORE ABOUT
FAMILY STRENGTHS & RESILIENCE
*Ann Turnbull is a co-director
with her husband Rud of the Beach Center on Disability:
www.beachcenter.org
Dads can get understanding
support from The Fathers Network: www.fathersnetwork.org
Revive your sense of humor
with the Mothers From Hell: www.mothersfromhell2.org
THE
LEGAL AID SOCIETY OF HAWAI'I WANTS TO HELP FAMILIES!
The Legal Aid Society of Hawai'i
provides legal and civil services for children and their families
who meet the income eligibility. These services aim to reduce
stressors in family situations. We have programs that are intended
for children and their families/caregivers living in Hawai'i
who are experiencing any family problem that requires legal assistance
to ensure safety, stability and economic self-sufficiency.
Families can benefit from legal assistance in resolving problems
in areas, including, but not limited to: child custody, housing,
consumer debt, employment, public benefits issues and other child
services such as education, teen pregnancy and runaway children.
We also have a wonderful program that may help children with
special needs receive up to $565/month in Social Security Disability
benefits. Call us at (800) 499-4302 ext. 265 for more information
on the many services that can be provided to your family or call
us to begin receiving those services immediately.
CAMP
COOL
The Assistive Technology Resource
Centers of Hawaii (ATRC) and United Cerebral Palsy Association
(UCPA) are sponsoring two interactive computer exploration camps
on January 22 and 29, 2005 for youth 8-13 years old with a disability
and their siblings. The camp will run from 9 a.m. - 3:00 p.m.
on Oahu.
For just $10 (includes lunch and camp t-shirt), participants
can explore the following anticipated activities: website development,
video work, digital still photography; and computer based applications.
Activities will depend upon the skill level and interests of
the participants.
Deadline for registration is December 15, 2004. Space is limited
so sign-up early. For more information, contact ATRC at 532-7110.
POSTSECONDARY
EDUCATION CAPACITY BUILDING INSTITUTE
The Hawaii State Council on
Developmental Disabilities, Center on Disability Studies, and
the College of Education at the University of Hawaii is sponsoring
"Students with Intellectual Disabilities and Postsecondary
Education
Capacity Building Institute: Discussions of Developments in Practice"
on February 27, 2005 at the Sheraton Waikiki Hotel.
The institute is a unique opportunity designed for parents, transition
professionals, college faculty and staff, and human service professionals
to learn about best practices in delivering
supports and services to students with intellectual disabilities
in postsecondary educational
institutions, and hear from students about their experiences.
There will also be a discussion of the postsecondary experience
from parents and postsecondary faculty. The cost of the institute
is $30. To register, call Teresa Whelley at (808) 956-9142 or
e-mail to Teresa.Whelley@cds.hawaii.edu.
HAWAII
YOUTH ADVOCATE PROGRAM
If you are passionate about
youth and families and are familiar with resources in your community,
then the Hawaii Youth Advocate Program could be the place for
you. The program is looking for adult youth advocates to work
with youth and their families using a strength-based model approach.
Youth advocates work 10 - 15 hours per week.
For more information on becoming a Youth Advocate, contact Hale
Kipa at 589-1829.
CONGRESS
PASSES IDEA 2004
In November, both the U.S.
House of Representatives and the Senate voted to adopt a compromise
bill to reauthorize the Individuals with Disabilities Education
Act (IDEA). It now goes to President Bush for signature, and
he is expected to sign it into law. Once signed, the new changes
to the provisions will not go into effect until the U.S. Department
of Education issues regulations, a process that can take at least
a year. Then Hawaii will have to revise its own version of IDEA-Chapter
56.
The Individuals with Disabilities Education Improvement Act of
2004 is the first revision of IDEA since 1997. It is viewed by
many parents and advocacy groups as a "mixed blessing."
As we go to press, there is not yet a detailed analysis of the
potential impact of these changes (probably because the bill
is 300+ pages long!). We can, however, share some of the common
reactions to the bill by parent and advocacy groups. We've organized
these reflections into a PLUS or MINUS column based on whether
these changes are seen as improving IDEA '97 or removing protections.
For more information, watch our website or go to www.dredf.org
or www.wrightslaw.org
for updates.
|
Topic Area
|
+ (Plus)
|
- (Minus)
|
| Discipline |
Requires
that schools conduct a functional behavioral assessment to a
student disciplined beyond 10 days |
Allows
schools to remove a student to an alternate setting for "committing
serious bodily injury" even if the behavior is related to
the disability |
| Early
Intervening |
Allows
schools to use up to 15% of IDEA money to support students who
are not yet eligible for special education |
Takes
needed funds away for meeting the needs of students already identified
as needing assistance |
| Evaluation |
Allows
for new approaches to determine if a student has a learning disability |
|
| Funding |
Full-funding
of IDEA is promised by 2011 |
No mandatory funding of IDEA
Allows for 50% of any "new"
funding to be used for regular education purposes
|
| IEPs |
Includes school nurse services
and interpreting services as related services
Allows minor changes to IEP
with-out a meeting if all parties agree
|
Removes the requirement for
short term objectives (except for severely disabled students)
Allows up to 15 states the
opportunity to use 3-year IEPs
|
| Procedural
Safeguards |
Requires
schools to convene a "resolution session" within 15
days of receiving a parent's request for due process hearing |
Allows states to cap the rate
of parent attorney's fees
Sets a 2 year statute of limitations
on a parent's ability to file for due process
Requires parents to pay school
attorney fees if complaint is "frivolous" or filed
"for any improper purpose"
Changes the time limit for
placement in an alternative educational setting from 45 (calendar)
days to 45 school days
|
EFMP
AUTISM & FAMILY SUPPORT GROUP
The Tripler Army Medical Center
Exceptional Family Member Program (EFMP) Autism Family Support
and Information Group for military families now meets one morning
a month. For further information about the group, contact Alan
Gamble, Medical Social Worker, at 433-6205/4441 or e-mail to
alan.gamble@us.army.mil.
CONSUMER
DIRECTION - THE VOYAGE OF CPASS
The Consumer Direction movement
in Hawaii is alive and well, as demonstrated by the four statewide
Community Personal Assistant Services & Support (CPASS) councils.
CPASS is part of a series of federal systems change grants funded
by The Center on Medicare & Medicaid Services (CMS), that
was awarded to the state Department of Health's Developmental
Disabilities Division. CPASS Councils are located on Oahu, the
Big Island and Molokai where council members provide outreach
to individuals in their respective communities.
CPASS hopes to demonstrate how personal assistance services can
be improved for individuals with developmental disabilities,
through training on topics related to self advocacy and consumer
direction. The councilsare planning a "Summit" in 2005
that will, for the first time, bring together members of all
four CPASS councils. The title for the Summit, "Navigating
Through The C's of Change: CPASS, Consumer Direction, and Cash
& Counseling" is consistent with the "voyaging"
theme used to create each site council's vision statement. The
purpose of the Summit is to provide an opportunity to learn more
about consumer direction from local and mainland experts.
In addition, a website designed by CPASS members that will highlight
consumer direction and related topics is planned to be unveiled
at the February Summit.
For information on CPASS, call Sandy Kofel at the Center on Disability
Studies at the
University of Hawaii-Manoa at 808-956-5827. Komomai kau mapuna
hoe: "Dip your paddle in." Join in the effort!
SPIN
AWARDS
Every year, SPIN singles out
some key parents and professionals whose efforts make a positive
difference in the lives of children and young adults with disabilities
and their families in Hawaii. These
outstanding individuals will be honored at our '05 SPIN Conference
titled "SPIN's Recipe for Success" on April 23, 2005.
We are asking for your help in identifying candidates for SPIN's
major awards:
*Parent of the Year
*Professional of the Year
*Family Choice Award
To request a nomination form, please call SPIN at 586-8126 or
e-mail accesshi@aloha.net. We want to hear about your "heros
and heroines" by March 4, 2005.
FRIENDS IN FOCUS
SEASONS'S GREETINGS
Hawaii Stars Concert
of Extraordinary Abilities
CPASS State Council Members
Artists at the Hawaii Artsplace
(HAPA) on Waimano Home Road
**If you've got a favorite
photo you'd like to share, please send it to SPIN.
CHECK
OUT THESE DATES
EFMP & LDAH sponsored workshops
12/6, IEP Workshop Series on Special Education
8,10 Fort Shafter Aloha Center
Call 536-9684, x26 or 655-2324
Hawaii Families As Allies Workshops/Meetings
12/14 Impact on the Family
12/15 "Last One Picked" video
12/15 Parent Support Group (Maui)
1/12/05 ADHD (Big Island)
1/25 Effective Communication (Maui)
1/26 Effective Communication (Big Island)
2/03 "Last One Picked" video (Molokai)
2/09 Positive Behavior Interventions (Big Island)
2/11 Positive Behavior Interventions (Big Island)
2/22 Stress Management (Maui)
2/23 Stress Management (Big Island)
For location and times, contact HFAA at 487-8785 or toll free
1-866-361-8825
2/28 - 21st Annual Pac Rim
Conference
3/1/05 Sheraton Waikiki
www.pacrim.hawaii.edu
3/5 Hawaii Branch of the International
Dyslexia Association (HIDA) Conference "Bridging the Gap"
Call 538-7007, or email to HIDA@dyslexia-hawaii.org
4/23 '05 SPIN Conference "SPIN's Recipe For Success"
UH Campus Center, Call SPIN
