|
October / November / December |
|
Inside
This Issue: |
Craig
Blackburn to Address DSAGNO
and Friends!!!
So
many times as parents we hear from everyone from professionals to relatives
and “well-meaning” passers by about what our kids can’t
or won’t be able to do. Here’s a chance to focus on what they
CAN do—which is a whole lot more than we think!. |
| Page 2 |
|
FROM THE EDITOR… “Kevy do it.” At first, he said
it more trying to convince himself he could do it than in defiance. Then,
later, he became more adamant. And finally “KEVY DO IT!” He
was determined to get into a box way bigger than him with no help from
Mom when I offered assistance. Karen Scallan DSAGNO
Seeks Executive Director |
| Page 3 |
|
Mark Your Calendars!! November 30. Roles & Responsibilities of the Consumer & the Circle of Support. 10:00am-12:00noon, Westwego Library, 635 4th Street, Westwego. For more info: 888-9111 December 4. Family Holiday Celebration. 10:30am-1:00pm. Annual Holiday Party for Families Helping Families of Greater New Orleans. Door prizes, holiday crafts to make, gift bags for kids, lots of fun. St. Jerome’s Knights of Columbus Hall, 3310 Florida Avenue, Kenner, LA 10:30am-1:00pm. RSVP by November 30, 2004. For more info/RSVP: 888-9111. December 4, FHF-GNO Self-Advocates Office of Jefferson Parish. Self-advocates holiday party, fun, food, door prizes, music and more. 6:00pm-9:00pm, Jefferson Senior Center, 4518 Jefferson Hwy. RSVP by November 30, 2004. For more info/RSVP: 888-9111. December 6-10. National Inclusive Schools Week. For more info, see article in this issue, or visit www.inclusiveschools.org. December 7. Positive Behavior Intervention PBI strategies for iEPs. 9am to 11am. Terrebonne Parish Library, Meeting Room 151 Civic Center Blvd., Houma. RSVP Madeline Lombardi, 1-800-331-5570 December 9, History of Developmental Disabiltiies. 1:00PM-3:00PM, 1125 E. St. Bernard Hwy, Chalmette. For more info: 888-9111. December 11, East Bank Self-Advocates. 11:00am-1:00pm, FHF-GNO, 4323 Division Street, Metairie. For more info: 888-9111. December 12, DSAGNO Holiday Party. Lafreniere Park’s Fontana Center. Pot-Luck dinner. Bring a dish. Food, Fun, Music. 4:00pm-7:00pm. Visit from Santa about 5:30. Call Karen at 467-7009 or Pam at 466-7176 to coordinate food and RSVP December 15, Standing Up for Ourselves Self-Advocacy meeting. 10:30am-12:30pm. Rosedale Library, 4036 Jefferson Hwy., Jefferson LA. For more info: 888-9111. December 18, West Bank Self-Advocates. 11:00am-1:00pm, Westwego Library, 635 4th Street, Westwego. For more info: 888-9111. Dates, times and locations subject to change. Verify by calling information line listed.
|
BIRTHDAYS
October November December DSAGNO
Issues Proclamation for DSAGNO
Board of Directors voted to issue a proclamation in support of National
Inclusive Schools Week. DSAGNO
President, Paula LaCour, stated that “Inclusion is the cornerstone
to independence for children with disabilities. It is vital to their ability
to reach their full potential in life.” In recognition of National
Inclusive Schools Week, DSAGNO
Board members also brought copies of Inclusive Schools Week materials
to their children’s schools to encourage them to participate in
inclusive activities and to learn more about the importance of inclusion.
Marian Vigo, DSAGNO
Vice-President, said “ I encourage all DSAGNO
members to talk to their child’s school principal about inclusion.
Bring a copy of the flyer from the web site and open the door to discussions
about more inclusion in your child’s school.”
|
| Page 4 |
Governor
Blanco Supports Choice In
October, I had the pleasure of meeting Governor Kathleen Blanco at the
Press Club of New Orleans’s annual Gridiron Show. When I met her,
I made sure I took the opportunity to tell her how much it means to me
as a parent of a child with a disability that she supports "Money
Follows the Individual" for people with disabilities and their families.
I was not prepared for her reaction. With tears in her eyes she hugged
me and said, "You know, it's not going to be easy." I told her
I realized that, but the fact that she understood and supported us meant
so much to me as a parent. We hugged again, now both of us teary eyed,
and the moment was over. These few seconds told me more about Governor
Blanco than any sound bite, commercial, or editorial. She gets it. And
she gets it as a politician, as a mother, and as a grandmother. |
LaCAN Region 1 Team Leader Vacancy If you’re not
familiar with Louisiana Citizens for Action Now (LaCAN), check out the
article in this issue about Governor Blanco’s new Executive Order.
LaCAN members participated in Governor Blanco’s Health Summit, advising
the Governor on the current situation of Long Term Care for Individuals
with disabilities in Louisiana and the benefits of “Money Follows
the Individual”, and they continue to advocate for a revised system
of community and family supports. Region 1 (Orleans,
Plaquemines, St. Bernard) VACANT |
| Page 5 |
| Special
Creations by Magnolia School, Inc. By Karen Scallan Recently I forgot
the bag of reading material I usually take to kill time when Kevin’s
in therapy. I could have kicked myself until I remembered the Special
Creations sign we see on River Road on the way home from Crane Rehab twice
a week. Every time I would pass there, I wanted to go in, but there was
always something we had to do or someplace we had to go. |
continued from
bottom of page... Mardi Gras Beads from The Arc With the holidays upon us, Mardi
Gras is just around the corner! Kids offer “Adopt-A-Mouse” for Down Syndrome Research Kids are amazing.
Just when we think they don’t care a story like this comes along,
and you just wish you could hug every one of these kids. This is a unique
idea from children at Gateway Preparatory School who wanted to make
a difference. Their classmate has a brother with Down syndrome, and
wanting to make a difference in his life and the lives of others with
Down syndrome, they decided to try to raise enough money through donations
and the sale of stuffed mice to fund research into treatments for Down
syndrome. Their web site says: “By adopting 1 or more mice today,
you will help Down syndrome research. This will enable individuals with
DS to get one step closer to their goals of a better memory and thinking,
plus a healthier, independent lifestyle.” |
| Page 6 |
|
Special
Thanks to Our Buddy Walk Sponsors
Without the generous support of these businesses, groups and individuals, Buddy Walk would not be possible… WWL-TV
Special thanks also to all the incredible volunteers that made this event a such a great success!!!! |
| Page 7 |
| From
My Side On November 4, 2004,
I was invited to speak at the 2004 Disability Services Statewide Conference
in Alexandria called, “Partnering for a Lifetime of Success.”
I was excited because for over a year I have been working with Mr. Kirby
Joe Lacour on public speaking. I want to promote being a self-advocate
through motivational speaking. This was my chance! |
continued from
bottom of page... Self-Determination
Workshop Editor’s
Note: The following is a reprint of an article by Marian Vigo which
previously appeared in DSAGNO News. Its subject applies to this issue’s
theme so we thought we’d re-run it. Continued, page 8... |
| Page 8 |
|
Self-Determination
Workship Continued frm p.7...
impressive. Person-centered planning increased for the majority, power shifted consistently to the individual, and quality of life, as judged by participants, family members, and service providers was enhanced in 14 out of 14 areas studied. On the other hand, there was no data to support that an increase in the quality of services (accreditation, licensing, IEP’s) improves the quality of life of individuals with disabilities. The self-determination movement is growing day-by-day and the keys to any successful self-determination movement are: bold goals; long-term change; leadership; resources from the community; culture and spirit; education, planning and strategic thinking. I believe that the DSAGNO can be a leader in our community for change in the direction of self-determination for people with disabilities. The changes occurring in our organization now are spearheading this movement. I hope everyone can jump on board to sustain the momentum created so we can create independent fulfilling lives for all of our children. Assistive Technology Act of 2004. On October 25, President Bush signed the Assistive Technology Act of 2004 ensuring individuals with disabilities throughout the country have access to assistive technologies to help them toward independence at school and in the community. For copy of the ATA, visit Assistive Technology Act Programs at www.ataporg.org. |
Our
House Part 2 Independence and Self- determination “Self-determination-
free will to determine one’s own mind.” |
| Page 9 |
Home
Ownership More Accessible for Since 1996, Louisiana's
Home of My Own (HMO) project has assisted individuals with disabilities
become homeowners. Clearly the need is great since less than 1% of all
Americans with disabilities own a home. A dismal statistic especially
when compared to the 65% of other adult Americans who own their own homes.
In 1999, the Olmstead decision affirmed that "individuals with disabilities
have the right to choose to live and receive services and supports in
the most integrated settings that are appropriate to their needs."
In other words, individuals with disabilities have the right to control
where they live and with whom they live through homeownership. |
FREE
AND REDUCED COST COMPUTERS TO LOUISIANA RESIDENTS WITH DISABILITIES!!!! Reprinted from the newsletter of Families Helping Families of Greater Baton Rouge. The Louisiana Assistive Technology
Access Network (LATAN) is offering a reduced-cost computer distribution
program. Participants will receive a Pentium computer with monitor, keyboard,
mouse, cables and Windows 98 Operating system for $90.00. Additional packages
are available for an additional cost. Computer packages are delivered
to participant’s door. Package selection or system requirements
can affect delivery time. |
| Page 10 |
Free
Parent’s Guide for Children SchwabLearning.org is offering a free guide on how to use the federal No Child Left Behind Act (NCLB) of 2001 to help children who struggle with learning. NCLB is already affecting the learning of both children who receive special education services under the Individuals with Disabilities Education Act (IDEA) and typical children. This guide introduces you to several key provisions of NCLB that you can use as tools to improve educational services for your child. By offering this guide, Schwab Learning strives to help you navigate the complexities of NCLB so that your child has the best possible opportunities to learn. You can download a FREE copy of “Making the ‘No Child Left Behind Act’ Work for Children Who Struggle to Learn: A Parent’s Guide” in black and white or with a color cover. Visit www.schwablearning.org/ for your free copy. Proven Ways You Can Help Your Child Do Better In School The Parent Institute has “44 Proven Ideas Parents Can Use to Help Their Children Do Better in School.” Here are some of their suggestions. Look for more “Proven Ideas” in upcoming issues or visit www.parent-institute.com. Relax family
bedtime rules once a week on the 66
Emergency Waiver Slots During the last legislative
session, LaCAN successfully obtained funds for 66 emergency waiver slots
which became available as of August 20th. A fact sheet about availability
and eligibility can be found at LaCan’s web site: |
Crane
Rehab Speech-N-Motion Holiday Camp 2004! 1st session: Tues., Dec. 21-Thurs., Dec. 23 9:00 A.M.-11:30 A.M 2nd session: Tues., Dec. 28-Thurs., Dec. 30 9:00 A.M.-11:30 A.M. $180.00 for each session if paying
in full
If you or someone you know has a disability and is on the never-ending list for waiver services, call the Disability Information Access Line at 1-800-922-3425 or 1-800-450-8108 TODAY! LaCAN will be working
this year to secure more new waiver slots, but it can’t be done
without your help. Call the Disability Information Access Line because
“It’s easy to ignore lists, but hard to ignore people.”
Help put FACES on those names on the waiting list. Call today, tell your
story and let your voice be heard.
|
| Page 11 A Call to Action by Karen Scallan |
A
nine-year-old with mental and physical disabilities is denied a library
card in New York because he cannot sign his name; A six-year old with
ADHD is tasered by Miami Dade County police with a 50,000 watt stun gun;
A “cartoonist” posts comics on the web that depict “mainstreamed”
kids with disabilities in a horrific light; Parents are pushed and pushed
to take their child with Down syndrome out of the track where their LEAP
test scores count only to find that when they do, their child isn’t
being educated at all anymore because they don’t count; family loyalties
are shattered when a child with a disability is too close for comfort;
And then there’s IDEA’s reauthorization.... Looking back, one might think we have arrived at a place where these things didn’t happen anymore. We’ve made so much progress in the protection of the rights of people with disabilities and in fighting the prejudices that threaten those rights. But these things and more continue to happen, with most of what you read above happening within the last month. So what’s the problem? Ignorance. It’s ignorance on the part of the people committing these prejudices and ignorance on our part. That’s right. It’s partly our fault. Every time something like this happens and we don’t band together to fight it, we’re allowing it to happen. Currently, there are organizations that provide opinions, evaluate candidates, and provide form letters to representatives. The Arc and UCP have joined forces and worked hard to provide an easy web site to navigate on the issues. NDSS just opened its Policy Center in 2004. Louisiana Citizens for Action Now (LaCAN) also provides information on any pertinent legislation of state issues that will affect our loved ones, as well as provides form letters to help assist in writing to your representative. On the local level, parent organizations and state legislative advocacy groups are overwhelmed with a few individuals doing what advocacy work they can and struggling to get people involved. This helps, but none of it shows the kind of organization or movement we saw in the civil rights organizations of the 1960s. There’s not one cohesive, all-inclusive organization for people of all disabilities fighting for the rights of people with disabilities. This is happening all across the country. It’s hit-or-miss and too haphazard to accomplish the big job ahead. The events described above will continue to happen and more often until we as parents decide we can’t just ignore it any more. We must say, “Enough is enough! Don’t mess with our kids and don’t mess with their education.” Trust me I know what you’re thinking. “How in the #@%$ am I |
supposed to
get involved in politics when I can’t even get the house cleaned
or deal with the school like I need to?” I know it’s not easy.
I’m there too, remember? So how can families who have to deal with all the issues of having a child or children with disabilities supposed to be effective advocates too? Start by getting educated on the issues. It doesn’t take a lot. Learn what IDEA means to your child. Learn how NCLB will affect your child. Just take a Families Helping Families workshop, do one LaSIG Leadership training through Families Helping Families, sign up for an online newsletter. Learn how to talk about these issues. Then, correct someone when they call your child “a Down syndrome.” Let them know that “People-First language” is the only acceptable way to talk about a person with a disability. Show people that your child is a gift from God just like theirs—no matter what their abilities are and that they have rights too. Don’t ignore prejudicial statements people make; call them on it. When you see something in print that’s prejudicial toward people with disabilities, let the publisher know that if those remarks were written or spoken on the basis of race, they never would have published them. Why then is it okay to publish them about a person with a disability? Start off small. Do what you can, but get involved at some level. Once you learn more, you’ll see how important it is. And you won’t regret it. And finally, let’s push for a strong national movement. Let’s support that movement with the money it needs to get the job done in Washington. Let’s support our state advocacy organizations with a little time and the money they need too. Let’s put our efforts where it counts. Because no matter what education your child gets, no matter how hard you work as an individual one-on-one with your child’s school and no matter how hard you help them at home to become educated, if they walk out into a world full of prejudices, they won’t be able to accomplish a thing. Think about it this way....do you want your young child to walk into the world at 21 and find the same world that existed the day he or she was born? I don’t. I won’t be able to change everything, but I will work to change something and I will know I’ve tried. LaCAN email updates I receive always have this wonderful quote, “Get into politics as if your life depended on it. Because it does.”—Justin Dart. In this case, our kids’ lives depend on it. |
| Page 12 |
|
4th
Annual Inclusive Schools Week The National Institute
for Urban School Improvement at the University of Colorado, Denver, will
celebrate their 4th Annual National Inclusive Schools Week December 6-10,
2004 in classrooms, schools and communities throughout the country. This
week recognizes the nation’s progress and promotes action toward
increasing the capacity of schools and communities to provide a quality
education to an increasingly diverse student population, particularly
those who have disabilities. The National Institute is a project of the
U.S. Department of Education’s Office of Special Education Programs,
and its mission is to support inclusive urban communities, schools and
families to build their capacity for sustainable, successful urban education.
The National Institute partners with regional resource centers to develop
powerful networks of urban local education agencies and schools that embrace
and implement a data-based, continuous improvement approach for inclusive
practices. Embedded within this approach is a commitment to evidence-based
practice in early intervention, universal design, literacy, and positive
behavior supports. |
For more information on how you and your school can celebrate National Inclusive Schools Week, visit www.inclusiveschools.org. On-line discussions and teleseminars on inclusion will also be available during the week-long celebration. Bayouland
Families Helping Families Bayouland FHF is collecting used
ink and laser printer cartridges for a fundraiser. If you have cartridges
to donate, contact BLF-FHF for more information at 1-800-331-5570 or
985-879-2001. DD
COUNCIL ANNOUNCES The Louisiana State
Developmental Disabilities Council has a new statewide toll-free number.
This line was established so callers can have direct access to Council
staff without going through DIAL. The new number is (800) 450-8108. |
| Page 13 One Dalmation and Two Very Large Nutria Included Among 3rd Annual Buddy Walk Participants!! By Karen Scallan |
Well
another year’s gone by and another Buddy Walk is complete. It’s
hard to believe we have had our Third Annual Walk already. This year was
another great success on several levels. First and most obvious, we had
a record attendance at this year’s walk. Over 1400 people attended
Buddy Walk festivities this year. Registrations came in from as far away
as Gulfport and Ocean Springs, Mississippi. (That’s a long way to
go early in the morning and we appreciate our friends from the Gulfport
DSA for joining us!) We also had a record number of volunteers! This was such a relief to seasoned Buddy Walk Committee members as well as new ones. We actually got to go home before dark after arriving at the site before dawn!! Thank you to EVERYONE who volunteered for the event this year and a special thanks from the entire Committee to Wendy and Mark Cartozzo who took on the job of recruiting, scheduling, and coordinating volunteers. Financially, it was a successful walk again this year too. Our books don’t close on Buddy Walk 2004 until December 31st, so please send in those pledges that are sitting in the dresser drawer. It’s not too late! The theme of this year’s Walk was “Advocacy” and in keeping with that, Buddy Walk Committee members instituted a new feature--the Advocacy tent. People signed up in record numbers to let our representatives know that messing with I.D.E.A. will hurt our children. Letters have been faxed to Washington and local offices. Unfortunately, before this is printed, the Conference Committee will meet on I.D.E.A. We’ll update you on the results in the next issue of DSAGNO News. Before the walk, the Holy Family Youth Group led participants in the anthem and they did a great job!! Craig Blackburn introduced our Emcee, WWL-TV’s David Bernard and Miss Teen USA, Shelly Hennig. David was a great Emcee this year and Craig was particularly thrilled to introduce him since he’s always wanted to be a weatherman. Much thanks goes to WWL-TV for their assistance in the production of our Buddy Walk commercial this year. Another newcomer to this year’s walk was the Destrehan High School Desty Darlings Dance Team. Desty Darlings led participants in a warm up (Not that we needed it! It was so HOT!). They also helped man one of this year’s new features: pumpkin painting, which, judging by the amount of paint on everyone, appeared to be very popular. Some of the highlights of this year’s walk included a return visit of the The Archbishop Shaw High School Marching Band. These wonderful kids voluntarily gave up their Sunday morning to play for us and lead the walk, and they were fantastic!!! If you saw some furry rodents walking among the participants this year, you weren’t seeing things. |
The Zephyrs’ Boudreaux and
Clotile joined DSAGNO
Buddies to walk for Down syndrome awareness. Participants again this
year were cheered on by the wonderful St. Michael’s School cheerleaders.
Their spirit and enthusiasm always help get everyone into the mood for
the big party after the walk.
DSAGNO is seeking an Executive Director to manage day-to-day operations and to assist in fundraising for the organization. A full job description and application is available CLICK HERE (If you are unable to download this form for any reason, please call (504) 846-6903) or by calling DSAGNO at (504) 846-6903. All applications should be mailed to: DSAGNO |
| Page 14 |
|
Websites Association for Positive Behavior Supports National
Center for Special Education National Institute
for Urban School Improvement SchwabLearning The Parent Institute Adoptamouse Final Report on Pollution,
Toxic Chemicals, and Mental Retardation Summit. In 2003, national leaders
met for a summit initiated by the American Assn. On Mental Retardation
(AAMR) in Racine, WI to discuss the impact of the environment on the health
and lives of persons with developmental disabilities. $31 Million in Federal
Funds to go Toward Various Disability Initiatives, Including Prevention
of Inappropriate Placement of Persons in Institutions. $31 million in
grants will go to 31 states from the US Health and Human Services Dept.
to help people with disabilities or long-term illnesses live in their
homes and participate fully in the community.
52 grants were awarded in categories such as quality assurance, housing,
transition from child to adult services, reform of long-term support systems
and mental health systems, independent living, developing educational
centers and information, and technical assistance Fact
Sheet Dispels Myths About Persons With Intellectua |
KidsCamps.com http://www.kidscamps.com Over 24,000 programs available in the United States, and around the world! Camp Categories include overnight, teen tours and adventures, day camps, military, sports, special needs, fine and performing arts, academic programs, study abroad, self improvement, special interest, leadership, spring and winter break, family and more. KidsCamps is a partner of the American Camping Association. More Than 8 Million
People with Disabilities Report Being Unable to Vote Due to Various Barriers.
According to a poll by the National Organization on Disability/Harris
Interactive, roughly one-fifth of Americans with disabilities who say
they wanted to vote were not able to. Reasons ranged from lack of accessible
transportation and inaccessibility of polling places to not understanding
the voting machine. This poll was part of a larger disability survey studying
voter preferences, issues of concern, and barriers to voting during the
U.S. presidential election season. Coming Soon! The January/February
2005 issue of DSAGNO News will focus on the Individuals With Disability
Education Act (I.D.E.A.). I.D.E.A. was reauthorized and revised in October
2004. Learn how the reauthorization of this Act will affect the education
and early intervention of all children with disabilities. Learn what the
next step is in the reauthorization process and how you can make a difference
in making sure the reauthorization’s implementation doesn’t
further impede a child’s right to a free and appropriate education.
In
the meantime...
|