Welcome to Our 2005 Winter
Edition of “Leadership Notes”
2005 ICC Parent Leadership
Institute
Our sixth
annual Parent Leadership Institute will take place May
11-15, 2005
in San
Francisco,
CA. We have a number of states that are
interested in participating. The Institute’s mission is to meet the learning
needs of participants and to support the work that groups of leaders will do
once they leave the Institute and return home. The three-and-a-half day
Institute will include parent storytelling, interactive activities and
intensive state-team planning, during which teams will develop a focused plan
for implementing a parent leadership-related activity in their respective
states six to nine months after the Institute. We will be offering these states
project support as needed.
Team Leader Conference Call
The project
also hosted a conference call with the State Team Leaders who participated in
the May 2004 Parent Leadership Institute in Orlando, FL.
Leaders from Vermont, Florida & Indiana shared some of the accomplishments
their teams have made since the meeting.
Here are a few of their comments:
·
The Indiana team reports that things are going well. A central location was chosen
for their recent ICC meeting, where the former Part C Coordinator and several
providers attended as guests. The parent
team facilitated the meeting and it was an open discussion. The team is committed to promoting more
gatherings
·
The Florida ICC hosts an annual event called
“Family Café” for family members with
disabilities. The ICC also met at the end of July. The group is in the middle
of changing its by-laws and went from four standing committees to three. The
state has parent consultants in 16 service areas. Roles are being revised to
help families connect to hospitals, ARCs, and
pediatricians.
·
Vermont had its ICC retreat in November
2004. The team members presented their action plans and their newsletter.
Parent outreach is being done by the ICC participants. The state team is also
outreaching to the Abenaqui community, where there is an increase in minority involvement. The
team’s main focus right now is getting their “grieving booklet” completed and
putting it up on the website. James Austin, a Vermont team member, started a dad’s group.
Two fathers showed up at the first meeting; now there are six dads, and that
number is expected to increase. One dad met with the Chief of the Abenaqui community. The meeting place for the dads group is different each month
so that the driving is shared by members.
A moms group was also started (“Moms night out”); it is a social group,
not a support group.
.Resources
www.carseat.org features automobile restraints for
children with special needs. This
website has a description for each product listed, as well as a list of
manufacturers and distributors.
Trips, Inc. (www.tripsinc.com) is rooted in
special education rather than the travel industry. Trips, Inc. tailors trips to accommodate a
broad range of developmental disabilities and personal needs. There is one
chaperone for every three to four travelers. They offer support to the needs of
individuals by matching the travelers by age, mobility, social skills and
capabilities. Female chaperones are paired with female travelers to help them
with personal needs. There are also additional chaperones, personal attendants
and nursing care to address other needs. Individuals needing one-on-one care
may bring their own support person. For more information please call (800) 686-1013.
You Will
Dream New Dreams, by Dr. Stanley Klein
and Kim Schieve. This book consists of inspiring essays
written by parents of special children for new parents of children with
disabilities. Contact your local bookstore, library or the publishing company
at Kensington Books, 850 3rd Avenue, New York, NY.
Resources for Dads:
The National
Fatherhood Initiative (www.fatherhood.org),
has an online bookstore, support, “dad email,” information on events,
conferences, exhibits, and speaking engagements. Contact: National Fatherhood Initiative, 101
Lake Forest Boulevard Suite 360, Gaithersburg, Maryland 20877. Phone:
(301) 948-0599. Fax: (301) 948-4325.
Books:
Ø
Fathers of Children with Special Needs, by James May.
Ø
Uncommon Fathers: Reflections on Raising a Child with a Disability , by Donald J. Meyer.
Ø
Breaking Autism’s Barriers: A Father’s Story , by Bill Davis.
Fathers Network (www.fathersnetwork.org) includes a statewide and national
database of fathers, articles by dads, upcoming conferences, events, and
workshops. You can read articles about advocating for your child, Men and the
Health Care System, and much more. A section for providers offers articles on
working with diverse families, a Bibliography of Cultural Competence, Equal
Partners, and other relevant topics. Contact: Chris Morris, Program Director, Washington State Fathers Network, Kindering Center, 16120 N.E. Eighth St, Bellevue, WA 98008. Phone: (425) 747-4004 ext. 4286.
Fax: (425) 747-1069
National Center for Fathering (www.fathers.com). The Urban Father/Child project
offers articles, programs and training programs. The email address for training
programs is gwillimas@fathers.com.
Contact: The National Center for Fathering, PO Box 413888, Kansas, City, MO 64141.
Phone: (800) 593-DADS. Fax: (913) 384-4665. For general info, send email to: dads@fathers.com
Upcoming Event:
“Annual Conference on Disability Issues:
National ADA Symposium and
Expo,” May 17-19, 2005, Kansas City (Overland Park Convention
Center).
For schedule and registration, go to www.adaproject.org
If you would like to share stories, an article, or any ideas you may
have, please call or email Marilyn Gutierrez-Wilson (800.493.2338 x 151; marilyng@fcsn.org).
Check out our website
for more details: www.iccparent.org