January / February 2004
Page 1

3 Local Advocacy All-Stars to Speak
to DSAGNO and Friends in March

An advocate: “One that pleads the cause of another; one that defends or maintains a cause or proposal.” Merriam-Webster Dictionary. Such a broad definition to describe something so profound. All parents advocate for their children. But to advocate for a disabled child means something even bigger. It entails learning new languages…the language of testing, legalese or medical terms. It may mean doing things you’ve never done before: public speaking, writing a legislator, traveling to conferences, or to meet with public policy makers. It may mean your life takes an entire new turn for the benefit of another.
To be a self-advocate means to do all of the above for yourself and others like you in spite of the fact that you’ve been tagged with labels that show others your disability, but not who you are. And it also may mean doing things you’ve never done before like public speaking, writing to your legislator, and so on.
Advocates are heroes in everyday clothes who were given the beautiful gift of knowing a person with a disability and have a desire to make the world a better place for them. Self-advocates are even greater heroes because they have the desire to make the world better for themselves and they accomplish this despite facing much greater challenges than most people.
On March 19th we have the opportunity to meet with 3 local advocacy “all-stars.” Rose Gilbert, Executive Director of Families Helping Families-GNO will speak about her son, Nick’s recent transition from the educational setting to being on his own. Rose will tell us about their struggles and triumphs through the system and how she views everything they advocated for for Nick as part of his ultimate transition to adulthood. Rose and Mary Jacobs, Manager of Education Projects for FHF-GNO, will speak about FHF programs and services available to help you advocate for what your child needs. For self-advocates, FHF also has many programs, workshops and assistance that can help you on your road to independence and help you advocate for yourself. And, last but not least, Bernadette (Bebe) Bode of LaCan (Louisiana Citizens for Action Now) a statewide grassroots organization that advocates for a system that supports individuals with disabilities to live in their own homes will be with us. Bebe will update us on recent legislation and LaCan’s goals are for the next legislative session.
All three of these ladies come to us with high credentials and are sure to be a wealth of information on various topics. So join us on March 19th at 7:00 p.m. at Crane Rehab, 101 River Road, Jefferson, LA and reap the benefits of their many combined years of experience.

Continued, p.11.

Attorney Joel Mendler Explains Special Needs Trusts
By Karen Scallan

On January 30th, attorney Joel Mendler, a partner with the law firm of Baldwin & Haspel, addressed a full house at Crane Rehab on the topic of special needs trusts and future planning for disabled children. Special needs trusts are set up to enhance the person's life over and above whatever governmental benefits they might receive.
The underlying message of Mr. Mendler's discussion was that special needs trusts absolutely must contain very specific language in order to protect the benefits your child is entitled to and that only a person qualified and experienced in these trusts should write the trust documents.
In her introduction of Mr. Mendler, DSAGNO President, Paula LaCour also emphasized that finding someone who specializes in these kinds of trusts is absolutely critical. And, in Mr. Mendler's discussion he gave a few examples of the kind of tragic results that can occur when the correct language isn't used in the trust or if no trust exists at all.
One frequent problem Mr. Mendler encounters in his practice is that of well-meaning family members who leave a few thousand dollars to their grandchild, niece or nephew without providing that the money go into a special needs trust. This act of kindness and love can reek havoc on parents who waited 7 to 10 years to get waiver services, only to find that they could lose the services and must go back to the end of the line to receive them again after their child receives an inheritance of as little as $2,000. Mr. Mendler emphasized that family planning for your child means the entire family. Everyone in the family should be aware of the importance of the special needs trust.
Mr. Mendler also discussed the personal care side of financial planning, noting that no matter how severely a child’s mental impairment is, he or she is considered an adult who can make their own decisions at the age of 18. If it is necessary that she/he have a guardian to make decisions, then he recommended something called a "continuing tutorship." The catch is you have to set the continuing tutorship up between the ages of 15 and 18 (and not right before the age of 18!). There are some requirements to a continuing tutorship, but overall the process is easier and less costly than an interdiction. After the age of 18, an interdiction is the legal process needed to set up a guardianship. Interdiction proceedings can be emotionally and financially draining on a family and require an appearance in court. Continuing tutorships do not require an appearance and are less costly in general.
Before ending his discussion, Mr. Mendler reminded everyone to check their beneficiary forms on IRA accounts, 401Ks and life insurance. Your beneficiary forms should name the special needs trust if you want your child to be either a primary or secondary beneficiary.
The bottom line is this isn't something to leave to the amateurs. Expert legal advice from someone experienced in special needs trusts should be sought out when families are planning for their child's future well being.
Attorney Joel Mendler, a native New Orleanian, is a member of the Special Needs Alliance, a national alliance of disability and public benefits law experts that design special needs trusts for personal injury victims and disabled persons. He is also a Board Certified Estate Planning and Administration Specialist and President and Director of the Advocacy Center for the Elderly and Disabled to name a few. You can reach Mr. Mendler at the offices of Baldwin & Haspel, L.L.C., 2200 Energy Centre, 1100 Poydras St., New Orleans, LA 70163-2200, (504) 585-7711.

Why is careful financial planning important for someone with mental retardation?
Our current service delivery system often requires that individuals who receive publicly funded mental retardation services be poor in order to receive funded services. Usually people with mental retardation receiving services, such as those paid for by Medicaid, must contribute toward the cost of their care with the proceeds from their earnings, Supplemental Security Income (SSI) or Social Security Disability Insurance checks. They are then left with only a small personal care allowance (as low as $30 in many states) to cover the cost of clothing, toiletries and related items. Parents often subsidize the costs of these items because the personal care allowance is insufficient.
If a parent dies and leaves their son or daughter an inheritance to help cover these personal costs, the inheritance will be considered an asset and the individual receiving the inheritance will be charged "cost-of-care." Publicly funded residential costs can be expensive, sometimes amounting to several thousand dollars per month. So, having to pay even some of these costs can quickly deplete funds needed for other purposes.
Careful financial planning enables a parent to provide help in purchasing personal care needs after the parent dies without exposing their son or daughter to cost-of-care charges. The local or state mental retardation services agency can provide information about how that state handles cost-of-care issues.
If my child is receiving Medicaid-funded services, won't he or she continue to receive Supplemental Security Income?
Many individuals with mental retardation receive SSI, a monthly monetary allowance that usually makes the person eligible for Medicaid health benefits. Adults are eligible for SSI if they have a disability that prevents them from working and earning a self-sufficient wage, and they do not have more than a certain amount of assets. Children also are eligible for SSI if they have "marked and severe functional limitations" from a physical or mental condition.
Medicaid often pays the cost of certain services for people with mental retardation. In order to remain eligible for Medicaid, a person cannot have more than $2,000 in cash assets or assets which can be converted to cash. In some cases items such as a home, car or a burial plot may not count as available assets.
If an SSI/Medicaid recipient has access to more than $2,000 in available assets, he or she would lose eligibility for SSI and Medicaid. An inheritance or gift above that amount would, therefore, generally disqualify a person from receiving SSI and Medicaid. The recipient would have to spend down the amount to below $2,000 before he or she could reapply for SSI or Medicaid. The inheritance or gift will not have benefited the recipient if the result is the loss of SSI and Medicaid.
How can I ensure financial security and not jeopardize my family member's benefits?
There are ways that parents can help ensure a degree of financial security for a son or daughter with mental retardation without jeopardizing the individual's SSI and related benefits. Some parents have chosen to disinherit the child with mental retardation and leave another sibling an additional share with the hope the non-disabled sibling will use the money to benefit the sibling with a disability. This is sometimes referred to as a "morally obligated" gift. Unfortunately, the assets often intended to benefit the child with mental retardation may not be spent on this person, and if the non-disabled sibling is divorced or dies prematurely, the extra funds may be distributed to a divorced or widowed spouse or another heir.
A more reliable method of providing for financial security without jeopardizing government benefits is through the use of a trust. Trusts hold

How do I go about setting up a trust?
There are basically two ways to set up a legal trust. It can be testamentary or inter vivos (living).
Testamentary - This means the trust is part of a will and does not take effect until after the person who drew up the will dies. Parents can change the trust's terms any time the will is changed. So, if the intended beneficiary should die first, the will and trust can change. Tax-wise, this kind of trust does not require the person to file or pay income tax on it since there are no funds in it until after that person dies.
Inter vivos (or Living) - This means the person sets up a trust before dying. In doing so, the parents and/or others can make regular gifts to such a trust. Grandparents can make testamentary bequests from their will to the trust set up for the child with mental retardation. Parents can be the trustee and manage the trust according to their own discretion. They can also assign someone else to be trustee to see how that person would manage the trust.
Living trusts are either revocable or irrevocable. This means parents can change a revocable trust or end it before they die. With an irrevocable trust, parents set up the trust and give up most power to change or end it. Both ways of setting up trusts have different tax advantages and disadvantages according to the size of the parents' estate, family situation and many other factors. Remember, though, it is important that parents or others consult with an attorney about which kind of trust suits that particular family's financial and tax situation.
Can I preserve my child's eligibility for SSI or Medicaid if my child has already received an inheritance?
Recent changes in the Federal Medicaid law allows an individual, in some cases, to transfer an inheritance to a certain type of supplemental trust and immediately qualify or re-qualify for Medicaid. These changes are included in the Omnibus Budget Reconciliation Act of 1993 (OBRA '93). OBRA '93 allows trust planning opportunities only to certain people who are disabled and to their aging parents who may need Medicaid services in the future. OBRA '93 allows a parent of a child with a disability or person with a disability to set aside funds in a supplemental needs trust. The trust must be carefully written to comply with OBRA '93 regulations and requires that the state providing services for the individual with a disability be paid back for the cost of services when the beneficiary dies. It is critical that the attorney drafting the trust is knowledgeable about the OBRA '93 legislation.

Note: This Q&A is only a general overview of one part of future planning. Families should work with a knowledgeable attorney or financial planner to explore other options of planning prior to making legally binding decisions.

Theresa Varnet is an attorney with Spain, Spain & Varnet and has a daughter with mental retardation. She can be contacted in Massachusetts at (508) 393-4380 or in Chicago at (312) 220-9112.
Thanks to Lawrence Faulkner, Westchester ARC, New York and Lisa Rivers, The Arc of Texas, for reviewing and commenting on this Q&A.

The Arc
National Headquarters
1010 Wayne Ave. Suite 650
Silver Spring, MD 20910
301/565-3842
301/565-5342 (fax)
info@thearc.org (e-mail)

DSAGNO's Annual Holiday Party was a hit again this year with plenty of fun and excitement for all. DSAGNO’s Social Committee Co-chairs, Pam Wiltz and Karen Gaddis, organized the food and fun along with the Social Committee elves: Ginny Bordelon, Liz Slattery, Laurie Guichard, Sue McCann, and Carmen Glaeser. Much thanks to these ladies who worked hard to put together a wonderful event.
Remi Palmisano and family were back this year to perform holiday hits. Many of the kids had a great time singing with them and dancing to the music.
Also in attendance was Santa who arrived around 5:30 to the excitement of the little ones. There were many great gifts for the kids thanks to the Whitney National Bank that generously named DSAGNO to their Toys-for-Tots campaign at the suggestion of Mary Barrios, grandmother of Josie Naiser and Whitney employee. Through the Whitney's Toys-for-Tots Program, DSAGNO children received Discovery Toys which sells educational toys that can be used to build various skills including occupational therapy skills.
Walgreen's Drug Store on the corner of Airline Highway and Clearview Parkway also donated toys again this year to DSAGNO's holiday party. Walgreen's has partnered with DSAGNO on the holiday party for the last two years by providing toys to be distributed at the event. Much thanks to the Airline/Clearview Walgreen's store for their continued generosity and support.
Greauds Fine Foods and Destrehan Discount Pharmacy donated drinks for this year’s party, both of which have been very generous to DSAGNO in the past by providing items for our special occasions—a big thank you to both Greauds and Destrehan Discount Pharmacy for their donations and continued support.
Available for viewing at the party was a 5-minute video derived from film taken at the 2003 Buddy Walk. Everyone enjoyed looking to see who they knew in the video and many DSAGNO children and families were featured. This video will also be made available for viewing at later meetings and possibly for purchase at a later date.
And, for those who haven't renewed, the Annual Holiday Party is the kickoff for our yearly membership drive. New and renewal memberships were taken, but not nearly as many as are needed. If you haven't sent in your renewed membership today, please do so. Just $15.00 helps us defray postage, printing, and other costs incurred by the organization.
A great time was had by all so you won’t want to miss our next big event…the Spring Picnic is just around the corner….!

You don’t have “Stick with the Program” anymore. Used to be if you signed up for therapy for your 0-3 child through one of the few programs locally, you had to get all your therapy through that program, speech, OT and PT. Not any more! With the changes in Part C and the take over by DHH of the 0-3 program, you can now choose individual therapists as opposed to a “program” or “agency” to provide services. You can receive speech and OT in one place, but choose an independent therapist for PT if that’s the person you want to work with your child.
Need More Therapy? Do you think your child could benefit from more than the usual suggested 1 hour per week of PT, OT or speech? If the IFSP team agrees that your child needs additional therapy, you can write it into the IFSP and your child could be receiving additional services in the areas where he or she needs it the most. The team must be able to justify the need for additional therapy, but it can be done where there is a need for it.
Building hand strength. Create a box with some fluid, dry material, rice, beans, corn flower, sand. Throw in a clean plastic scoop from the laundry detergent and some water toys like shovels, buckets, wheels that turn. The act of scooping and pouring the material strengthens the hands and fingers.
Playdoh is a great hand-strengthening material, especially with Playdoh tools for cutting and pressing out shapes.
Purchase a corrogated plastic "tube" and have the child pull the corrogated tube open and closed to help build hand strength. The tube makes funny noises when opened and closed and kids love them. $1.50. (Heather Harris, Crane Rehab)
Use plastic Mardi Gras cups in the bathtub. First try getting them to just pour from one cup to another. Then, weight down the bottom half of the cup with sand in a plastic baggie. Tape the baggie into the bottom of the cup with duct tape, then let them fill it and pour. The extra weight helps them build strength. (From Laura Vagianos).
Building hand-eye coordination and OT skills. Take a clean, empty cannister that held baby wipes and some popsicle sticks. Have your child practice putting the popsicle sticks into the top of the container where the wipes pop up. For fun, let your child decorate the cannister with their favorite stickers. (From Edith Michel).
Feeding. When teaching a baby to hold their own bottle, try using simple dollar store bottles with the handles on them. (You can find them at Dollar Tree. (From Edith Michel)
Use Dollar Tree store spoon and fork sets with thick oval handles. The handles are textured for additional input into the palms when feeding. These forks and spoons are heavier than plastic ones, also providing additional sensory input while feeding. Note: The ones at the dollar stores are exactly like some of the ones sold for much more in therapy catalogs for much more.. (From Edith Michel)

PARENT REQUEST: If you have any tips on what to do when your child swears, please send them in. We have a specific request in this area and I'm sure others could use the information.

If you have other items for Through the Grapevine send them to Karen Scallan at kscallan@cox.net

In Loving Memory….Mary Barrios

Mary Barrios, DSAGNO member, grandmother of Josie Naiser and Mom to Monique Naiser passed away recently. Mrs. Barrios was a regular at our general membership meetings and social events. As an employee of Whitney National Bank, Mrs. Barrios petitioned Whitney last fall to name DSAGNO as their Toys-for-Tots recipient over the holidays. Thanks to Mrs. Barrios and the Whitney’s generosity, DSAGNO children were treated to Discovery Toys from Santa at our annual Holiday Party.
Mrs. Barrios’s generous, warm and loving spirit will not be forgotten among those who had the great fortune to know her. Her love and devotion not only to her granddaughter, Josie, but all the children of DSAGNO was felt by all those whose lives she touched. She will be deeply missed by everyone at DSAGNO.
It was Mrs. Barrios’s wish and her family requests that in lieu of flowers donations be made to DSAGNO.

From My Side.
By Craig Blackburn

DSAGNO meetings are fun and I always seem to meet new people and learn new things. Last year in 2003, I was at a meeting where there were speakers from two groups, one group was the Louisiana Special Olympics and the other was JoJo's Hope. I knew what Special Olympics was since I participated in the sports for many years. I didn't know what JoJo's Hope was though.
There were three speakers from JoJo's Hope and two of them were: Robbie Fritscher and Kathy Ault. A video was shown to explain JoJo's Hope and I was really like seeing it. I liked it so much that I asked Robbie that night if I could become a volunteer. I started the next week volunteering Monday nights with the group at Elmwood.
I asked Robbie and Kathy if I could interview them for this article and Robbie agreed to talk to me about JoJo's Hope. Robbie explained that JoJo's Hope is a charitable organization dedicated to working with individuals with disabilities to teach them how to swim. Robbie founded this organization because he had a nephew, Joseph Michael Fritscher, who, at the age of three, drowned in eighteen inches of water. Robbie wanted to remember JoJo's name and memory by helping others learn how to swim since so many people, especially disabled, do not know how to swim.
JoJo's Hope offers swimming lessons to individuals with disabilities from the ages of 3 all the way up to 85 years of age. The cost is $24 per month for 4 sessions. Most children do not know how to swim when they join, but they learn fast and have fun doing so. Robbie feels like the benefits of the program include: building self esteem, providing physical exercise and learning water safety. The program operates for eleven out of twelve months and there are seven staff members and about twenty volunteers. The lessons are given at Elmwood Fitness Center on Clearview Parkway.
Robbie hopes to see JoJo's Hope expand all over the country. Ways that others can help JoJo's Hope is to volunteer your services and, also, make contributions to the program.
I really enjoy working with the staff and students. It is great to go each week and see the progress that everyone makes and how proud they are of themselves. I know how important being able to swim was for me and helped me feel like I could do something as well as others could. I was able to participate in sports with disabled and non-disabled individuals. With caring people like Robbie and Kathy, JoJo's Hope can only become bigger and better.

DSAGNO is looking for beads to distribute at the NDSS convention again this year. You may recall that the Mardi Gras beads and Magic Seasoning Blends give aways were a big hit at the 2003 convention in St. Louis. The beads were given out to those attending breakfast on the first day of the convention. Word traveled fast and after that, everyone wanted to know "where'd ya get those beads?" We had quite a crowd at the DSAGNO booth where convention goers were given more beads, DSAGNO print materials and a pitch to have NDSS hold a convention in New Orleans.
This year DSAGNO is reiterating last year's pitch and hopes to firm up some plans to have NDSS come to New Orleans. So help DSAGNO create a buzz…save your beads and donate them to DSAGNO. If you have beads to donate, or any other ideas or donations for DSAGNO to bring to the convention, email or call Paula LaCour at klacour1@bellsouth.net or (504) 846-6903.

BIRTHDAYS
Join us in celebrating the following birthdays!!

January
Kyle Kocielniak
Maggie Biernart
Austin Edler
Mark Silvio
Leana Pivaral
Hannah LaCour
Brandon Firmin
Brandon Palmisano
Joey Hauth
Joshua Keller
-----------------------------------------
February
Megan Dodson
Sarah Gibson
Victoria Leonard
Celeste Rebstock
Marissa McCann
Angela Hall
Victoria Lawrence

The American Academy of Pediatric Dentistry (AAPD) recommends that all children should visit a pediatric dentist by age one. In addition to training in general dentistry, a pediatric dentist must complete a 2 year residency program where he/she receives specialized training in the areas of child psychology, behavior modification and patient management. This specialized training qualifies pediatric dentists to treat children with mental, physical and emotional disabilities.

Some oral characteristics of children with Down Syndrome are:
A. Missing teeth
B. Abnormally shaped teeth
C. Greater evidence of malocclusion
D. Generally, resistant to decay
E. Generally, a greater susceptibility to periodontal (gum) disease

Good oral hygiene, diet control (limit refined processed sugars) and preventive care by a board certified pediatric dentist are the best methods of avoiding dental problems. The AAPD and the American Academy of Pediatrics (AAP) agree that all children should visit a pediatric dentist by age one.
As the first board certified pediatric dentist in Metairie, Dr. Marvin V. Cavallino has many years of experience treating children with special needs. Please take a few minutes to view his website at ww.cavallinodentistryforkids.com. The website will provide you with in-depth information about his office and give you answers to the most frequently asked questions about a child's first dental visit. Also, feel free to call his office at 833-5528 and ask to speak to Dr. Cavallino or speak with one of his team members about any concerns or questions that you have regarding your child's dental health.

DSAGNO Launches Phase I
of Important New Web Site on Disability Issues
www.dsagno.org
by Karen Scallan

DSAGNO announced the launch of Phase I of its new web site, at their January 30, 2004 general membership meeting.
DSAGNO President, Paula LaCour stated, "This web site is critical for not only new parents and current members in the greater New Orleans area, but hospitals, doctors and nurses here also. Prior to this launch, there was no central place for the medical community to get such extensive and specific information for their patients with children with Down syndrome." Ms. LaCour also noted that much of the information on the web site is not only specific to families raising children with Down syndrome, but applies to families with children with other disabilities also. She noted that educational professionals, agency representatives and therapists will also find the site useful as a reference for themselves and the people in the community that they serve and their families.
Phase I is an aggressive undertaking resulting in an extensive web site featuring approximately 75 pages which act as a hub of information on Down syndrome and other disability issues. The site includes basic Down syndrome facts in both Spanish and English; information specific to new parents; education topics such as IEPs, IDEA and NCLB; medical issues such as heart conditions, Celiac disease and more; health and safety items; advocacy information; independent living; self-determination; record keeping; and, benefits and life planning.
An Information Alert button is featured on the main page to alert parents of up-to-the-minute notices about important legislation and other time-sensitive notices. The web site has a calendar of events with not only DSAGNO events, but events of other organizations as well, such as Families Helping Families and The Arc which serve the disabled population and their families. Also included are current and past issues of the DSAGNO News newsletter, lists of recommended reading, extensive links, Buddy Walk information, DSAGNO press releases, a photo gallery and organization information.
Some of the information on the site is presented in Spanish and DSAGNO anticipates adding as much information as possible in languages other than English. Phase 2 of the web site, is set to be launched July 1st and will include interactive features. The web site was designed by MJR Photography and Graphics.
Take a look at the site and let us know what you think. For comments, suggestions and submissions, email kscallan@cox.net.

Grandparents: The Do's and Don'ts of Planning for Your Grandchild with Special Needs.
As reprinted from the Exceptional Parent Magazine's Website
http://www.eparent.com/

Grandparents want the best for their children and grandchildren. They often give gifts while alive, or make provisions for after their death. Grandparents who are in a position to leave money to grandchildren often want to do something for their grandchild with special needs. They often worry about a grandchild with a disability, who may need additional assets or assistance to enjoy a good quality of life. Grandparents are sometimes told not to leave their grandchild with special needs anything because the child may lose government benefits. People are often confused as to what to do or not do.
Grandparents can leave money to their grandchild(ren) with special needs. But there are very precise ways to do it. Money has to be left in such a way so that government benefits are not lost. Assets in excess of $2,000 will cause the loss of certain government benefits for the person with special needs. If properly structured by a knowledgeable special needs attorney, the special needs trust assets will not count towards the $2,000 SSI limits for an individual. Money should not be left to the grandchild directly, but should be left to a special needs trust. The special needs trust was developed to manage resources while maintaining the individual's eligibility for government benefits. The trust is maintained by a trustee on behalf of the person with special needs. The trustee has absolute discretion to manage the money in the trust and decides how the money is used. The money must be used for supplemental purposes only. It should only supplement, or add to benefits (food, shelter or clothing) that the government already provides through Supplementary Security Income (SSI). It must not supplant or replace government benefits. If properly structured by a knowledgeable special needs attorney, the special needs trust assets will not count towards the $2,000 SSI limits for an individual.
Brief Summary of Do's and Don'ts!
Do's:
1) Make provisions for your grandchild(ren) with special needs. Leave money to the child's special needs trust. The special needs trust is the only way to leave money without losing government benefits.
2) Coordinate all planning with the child's parents or other relatives. Notify the parents when you plan for grandchild(ren). Plan with others.
3) Leave life insurance, survivorship whole life policies and annuities to the child's special needs trust. The special needs trust can be named as the policy beneficiary. When the insured or annuitant dies, the death benefit is paid to the special needs trust. The special needs trust then has a lump sum of money to be used in caring for the grandchild(ren) with special needs.
4) Consult with trained financial and legal professionals with specialties in special needs estate planning.
Don'ts:
1) Do not disinherit your grandchild(ren) with special needs. Money can now be left to a properly drawn special needs trust. It does not make sense to disinherit any of your grandchild(ren) with special needs.
2) Don't give money to your grandchild(ren) with special needs under UGMA or UTMA (Uniform Gift or Transfer To Minors Act). Money automatically belongs to the child(ren) upon reaching legal age. Government benefits can be lost!
3) Don't leave money to a grandchild(ren) with special needs through a will. Money left will be a countable asset of the child and may cause the loss of government benefits.
4) Don't leave money to a poorly set- up trust. Money left in an improperly drafted trust can result in the loss of government benefits.
5) Do not leave money to relatives to keep or hold for the child with special needs. The money can be attached to a lawsuit, divorce, liability claim or other judgment against the relative.

March 15, Supported Living Services “Making It On Your Own” Learn how supported living services can help you become more independent! 10:00a.m.-12:00noon, VOA, 320 Hammond Hwy, Ste. 300, Metairie, LA. For more info: 888-9111.

March 16, “Discipline Rights for Students with Special Needs.” Learn how specific protocols must be used by schools in addressing behavior and discipline under IDEA. Specific protocols are covered. Includes questions and answer session regarding your child and how they are being disciplined at school., 10:00 a.m.-12:00noon, Westwego Library, 635 4th Street, Westwego, LA

March 18, “Home Ownership Training” 9:00a.m.-2:30pm., Jefferson Senior Center, 4518 Jefferson Hwy. To register: Debra Scott or Laurie Arceneaux: 888-9111.

March 20, “Understanding the Individualized Evaluation” Do you understand your child’s evaluation completely? Learn what you need to know to fully understand the evaluation. 10:00a.m.-12:00 noon, Old Metairie Library, 2350 Metairie Rd. For more info: 888-9111

March 22, “Empowering Challenged Parents/Parenting Challenging Children.” How to handle pre-adolescents and adolescents. FREE 6:30p.m.-8:30p.m., St. John Parish Library, 2920 Hwy 51, LaPlace. Information/Registration: Lacey 985-879-2001 or 1-800-331-5570

March 25, “Want Friends”? Learn the tools needed to be a good friend and develop meaningful relationships. 6:00-8:00pm FHF-GNO, 4323 Division St., Ste 108, Metairie. To register, call Debra Scott or Laurie Arcenaeux. 888-9111.

April 3, DSAGNO ANNUAL PICNIC. 11:00 a.m.-3:00 p.m., Kenner’s Veterans Park, 1901 Williams Blvd. Flyer to be mailed, Call Pam or Laurie for more information.

April 14-17, Council on Exceptional Children’s Convention and Expo, NEW ORLEANS. Check this and future issues of DSAGNO News for more info on this important conference concerning Special Education. Also watch the CEC web site at www.cec.sped.org for more information. Early Registration ends March 24, 2004.

April 21, A Foundation for the Future: Bayou Land 8th Annual Conference for families of children with special needs, adults with disabilities, foster/adoptive parents, professionals. 8:00 a.m.-5:00 p.m. Houma-Terrebonne Civic Center, Houma, LA. For more info: 1-800-331-5570

Opportunities Perk Up for DSAGNO
With Coffee Pot Project
By Ann Lafourcade

In a partnership with the ARC, DSAGNO is working to develop a business plan for a project that will employ disabled individuals fixing coffee pots. America's Cup Coffee, LLC, headquartered in Slidell, LA, provides coffee and cappuccino products, equipment and service to the Army and Air Force Exchange Service, an instrumentality of the United States that provides retail services to soldiers, airmen, and their families through a network of stores located throughout the U.S., Europe, and the Pacific Rim. Mr. Robert B. Barrett, Jr. and Mr. Paul C. Ragland founded the company in 1992 and organized it as a limited liability company in 1996.
This local company has already donated to DSAGNO 16 pallets of broken cappuccino or coffee house type units, the kind they have in establishments like PJ's and Starbucks. It seems that they are routinely thrown out and replaced when broken. Don Owen, chairman of our strategic planning committee, thought of a plan to make them useful once again and to make many people feel happy and useful fixing them. So, with the help of Pat Mullins of Magic Seasoning Blends who arranged for free freight and acted as liaison with the entities involved, the seeds have been planted for the project.
The next step is to get a unit repaired so that a method can be designed, perfected, and used to train workers to refurbish them. Contacts are already being made to find buyers for the renovated pots. Certainly, there are obvious benefits for the mentally disabled population, but this business venture will also benefit DSAGNO which will receive a portion of the profits for its role in creating and developing this project.
Thanks to Don, Pat Mullins and others for spearheading this endeavor and for having the vision to create vocational opportunities for those with Down syndrome and other mental disabilities. The army's trash has indeed become our treasure, and so we are reminded of the wealth we have in each other working together to make life better for our children.

Marian Vigo Hauth, Vice-President of DSAGNO and Buddy Walk Chairperson, has been confirmed as a member of the Louisiana State Developmental Disabilities Council DD Council. Marian will serve on the DD Council where she will work with other members of the council on initiatives designed under the mission of the DD Council: "to ensure all individuals with disabilities benefit from supports and opportunities in their communities so they achieve quality of life in conformance with their wishes." Marian has been an advocate for the rights of people with Down syndrome and other disabilities since the birth of her son who has Down syndrome. She is a 2002 graduate of Partners-in-Policymaking and has organized and chaired DSAGNO's highly successful Buddy Walk for the last 2 years. She has worked with community leaders and school officials toward bringing inclusion to our parochial education system, lobbied officials in Baton Rouge at the annual "Pie Day," and is a devoted advocate who believes we can create a better world for our children. Marian will be bringing us news from the DD Council regularly in the DSAGNO News. Congratulations to Marian on her confirmation and best wishes for continued success in her advocacy efforts.
Another member of DSAGNO's Board, Craig Blackburn, has recently applied to the National Council on Disabilities' Youth Advisory Board. Craig submitted an extensive and quite impressive application to the National Council recently and we will keep you updated on the progress of his application. As most of you know, Craig is DSAGNO's Self-Advocacy Committee Chairperson and is an active member of the board. He is also in Partners in Policymaking this year. Craig helped lobby NDSS in July of 2003 for a Conference in New Orleans and is active on the Buddy Walk Committee and other DSAGNO projects as well. Good Luck to Craig in his application process.
And, last but not least, DSAGNO member and former President, William (Bill) Boustead, was recently voted in as interim 2nd District Representative to the Jefferson Parish School Board. Bill is also a former President of The Arc of Greater New Orleans. Bill and his wife Sharon (who also is a former President of DSAGNO) are parents of 4 children, including Joey, who has Down syndrome. Joey is 14 and attends Harry Truman Middle School in Marrero. During the interview process with the School Board, Bill promised to deliver a new perspective on special education to the Jefferson Parish School Board. Congratulations to Bill on his new position with JPSB and much thanks to Sharon and Bill for their tireless and continued efforts toward advocating for children with special needs.

As a new member of the DD Council, I was concerned about what I had gotten myself into this time. I vowed that I would not go hog wild volunteering to be on every committee. Unfortunately, there is so much work to be started, continued and completed in the disability community. Yet after my first meetings in Baton Rouge on Jan.21 and 22, 2004, I became energized to give my all just at a less frantic pace.
A wonderful facet in being appointed to this council is you meet others with the same level of dedication in addressing important issues that affect individuals with disabilities. The DDC has an Executive Board headed by Sandee Winchell. Sandee and the staff are movers and shakers. They are paid employees that work for the DDC to ensure the Council's goals are being met. They also act as overseers for the council. The DDC Executive Board could be used as a model for DSAGNO as our organization moves ahead in its mission of providing opportunities and information for those individuals born with Down syndrome and their families in the greater New Orleans area.
It was incredible to see how the decisions that the DDC makes, directly affect the lives of those living in our community. The DDC approves state funding for Families Helping Families throughout Louisiana and the local Arcs. In the past, my family has benefited directly from these institutions as, Joey, my 5 year old, attended and received early intervention services through The Arc. A number of DSAGNO members, including myself, were also granted stipends from FHF last year to attend the National Down Syndrome Society Conference held in July of 2003. Because of our strong and enthusiastic attendance at this conference, New Orleans is in the running to be the host city for the 2006 NDSS conference. Imagine the influence of hosting the national conference in New Orleans. Not only would it make it affordable for our families in our area but could be attended by educators, legislators, grandparents, service providers, therapists and the list could go on and on. The ripple effect could have a tremendous impact in improving the lives of people with Down syndrome right here in our back yard.
Some of the projects the DDC is looking into include: an extension of the St. Charles School System Inclusion Project into Region 1 which includes Jefferson, Orleans as well as several other parishes in the greater New Orleans area; a government internship for adults with disabilities; and sheltered work shop conversions.
By being a part of this Council, I feel that I can have more of an influence in creating a better world for people like my son Joey. I am also hoping to bring back to DSAGNO many of the tools the Council uses to accomplish their goals. I honored that I have this opportunity to serve the state in this capacity and excited about the opportunity to bring to DSAGNO members news about the DD Council and its accomplishments.

The LA 4 Pre-K Program at Marie Riviere Elementary is an inclusion class. Our son Stephen Slattery is in one class and Callie Laird, another member of DSAGNO, is in the other one. They were placed in this program under the umbrella of the preschool special education department of Jefferson Parish. It has been a wonderful program for them both. The classes are limited to two children with special needs each and include a second aide who is designated to help these students. This particular pre-k program is funded partly by federal and state funds and must meet new and specific standards of teaching and student achievement. The “High Scopes” learning method is used to encourage students to learn by discovery rather than by being told what to do all the time. Children are often asked what they would do with the craft material or what learning center they want to go to next. In this inclusive setting, the critical thinking and creating skills needed are often modeled by the peer students for the ones with special needs to follow.
Although this is a great teaching method because it encourages the students to think and decide, it becomes a challenge for the non-verbal child like Stephen. Stephen’s speech is slowly emerging so he is receiving augmentative therapy now. Augmentative therapy is the use of “special devices and methods of communication which enhance or provide alternatives for spoken language.” (Ontario Agencies Supporting Individuals with Special Needs (OASIS) web site, http://www.oasisonline.ca/augmcom.html. His teacher, Mrs. Boquet, will show Stephen pictures or offer him choices to get his input after which she will say the words and he will repeat them. He is learning how to communicate with signs and pictures in addition to his continued vocal efforts. The use of augmentative therapy “promotes personal empowerment as it provides individuals with a means to control their environment, interact socially, and enhance learning.” (OASIS) Stephen has a lot to communicate and this has helped him a great deal.
Callie, on the other hand, has increased her speech tremendously according to her mother, Patricia. She was concerned that moving to a large school would be a problem for Callie, but this program has, with its structured play and creative time, helped Callie to communicate to the point of speaking in sentences. One thing that benefits both Callie and Stephen is that they are treated just like the other children and are expected to follow the rules with no special treatment. From lining up for water and bathroom trips to getting their tray at lunch and sitting where they are assigned, Stephen and Callie have risen to the challenge. In all these activities the children are expected to understand directions and respond accordingly.
Incorporated into the class week at Riviere is an adapted physical education program, speech therapy and music therapy. Stephen is now excelling in riding the two-wheeler with training wheels while Callie still has yet to decide if she is going to pedal. Being in this class gives Stephen wonderful peer models as his classmates are friendly and helpful. The high expectations have encouraged Stephen to grow socially and academically.
Marie Riviere Elementary is a small, friendly school. The students come from racially and socially diverse backgrounds. Most of the students already know Stephen as he has been known to tell the entire cafeteria hello as his class passes through on the way to the

Stephen’s re-evaluation is coming up as he is turning six in May, but we hope he can remain at Riviere for kindergarten. There is no total inclusion program there, but there are some possibilities we are exploring. The LA 4 pre-k program is offered at certain schools in the area, though not all are inclusive programs. Hopefully more of our children can take advantage of all it has to offer.

Social Committee Seeks Refreshments/ Volunteers
for DSAGNO Events

The DSAGNO Social Committee is compiling a list of volunteers who would like to help out with the refreshments for our meetings and social events. If you are able to donate small items like a bag of ice, cups, make a batch of cookies, bring some canned drinks or other small snacks to our general membership meetings, or assist the committee in other ways, please contact Pam Wiltz, Social Committee Co-chair.
And, as always, if you are able to help the Social Committee with refreshments for any of our other DSAGNO events, please contact Pam. Maybe there’s a great new restaurant in your neighborhood that would like to advertise a little…they may be interested in donating to our upcoming picnic and other events.
Pam Wiltz can be reached at 466-7176.

JP Schools System's Augmentative/Alternative Communication Site
This excellent web site explains the use of augmentative devices and methods to enhance your child's ability to communicate. Site includes tips, activities, jokes, ways to use devices, classroom engineering, activities, resources and links. Look for Liz Slattery's article regarding their augmentative therapy experiences with Steven in our next issue!
http://speech.jppss.k12.la.us/aac.htm

Louisiana Developmental Disabilities Council
The mission of the LA DD Council is to ensure all individuals with disabilities benefit from supports and opportunities in their communities so they achieve quality of life in conformance with their wishes. http://www.laddc.org/

National Council on Disability
The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting Americans with disabilities. NCD is composed of 15 members appointed by the President and confirmed by the U.S. Senate.
http://www.ncd.gov/

Youth Advisory Committee of the National Council on Disability
The Committee provides advice to the National Council on Disability (NCD) on various issues such as NCD's planning and priorities. NCD is seeking this type of input in order to make sure NCD's activities and policy recommendations respond to the needs of youth with disabilities. The Committee will consists of 12 youth and young adult members representing the interests of each federal region. http://www.ncd.gov/newsroom/advisory/youth/youth.html

Beyond Play Toys
Focuses on young children with special needs. Their goal is to provide a great selection of products that are all appropriate for early intervention. Catalog and web site are for professionals of all disciplines, as well as parents and caregivers.
http://www.beyondplay.com/index.htm

NDSC Convention Tapes Available
. Miss the NDSC Convention last year?
Purchase tapes of the sessions for as little as $8.50
http://www.ndsccenter.org/cdc.asp

Boohbah
Boohbah by PBSkids.org is different from most educational TV. It is intended to foster a style of active viewing in which the things that children learn from viewing are not determined primarily by the content of the program, but rather by the ways that young viewers (and the grown-ups who care about them) engage with the program. Woven into the design of Boohbah are opportunities to help children build skills in five different learning areas: Movement; Mathematics, Problem Solving/Science, Language, Imagination. Check them out at http://pbskids.org/boohbah/parentsteachers/parents.html

Advocacy Center
The Advocacy Center (AC) is Louisiana's protection and advocacy system. Federal law requires that a protection and advocacy system operate in every state to protect the rights of persons with mental or physical disabilities. Among the diverse services offered are legal representation, information and referral, outreach and training. The Advocacy Center is committed to a belief in the dignity of every life, and in the freedom of all people to experience the highest degree of self-determination. Embracing this philosophy, the Advocacy Center exists to protect and advocate for the human and legal rights of persons living in Louisiana who are elderly or disabled.
http://www.advocacyla.org/

Project Prompt
Project Prompt advocates that parents can and should become effective partners with professionals in the planning and implementing of appropriate programs. The program is committed to helping parents of children with disabilities to become full participants in their children's educational process. All parent facilitators with the program are also parents of children with disabilities.
http://www.projectprompt.com/index.php

Other Articles on Special Needs Trusts:
http://disabilities.surfwax.com/files/Special_Needs_Trusts.html

Coming Soon!
Look for many new and exciting articles in the next issue of DSAGNO News, including the Slattery family's augmentative therapy experiences, more from “Our House” and from “My Side” by Kirby LaCour and Craig Blackburn and much much more.