Friday, September 16, 2005

Benefit Special Needs and Preemie Groups (Updated Sept. 13)

Newest post and listings from Jeff Stimpson

Listings and needs are getting more specific and detailed for organizations in Katrina's path that focus on special needs or premature birth, or both. Here are some of the latest, in no special order:

A detailed clearninghouse-type listing from the ARC of California.

And another: www.waisman.wisc.edu/kennedy/katrina.html

The Mississippi Chapter of the March of Dimes writes, "I apologize for not responding sooner, but our Internet has been down since the hurricane. Anything you are able to do will be greatly appreciated. Our needs right now are for diapers, wipes, ready-to-feed formula, and baby food. We took a truckload of these items and maternity clothes to the Gulf Coast last Thursday and are also providing supplies to some of the other shelters around the state. We are expecting a large shipment of baby clothes from Gymboree which will also be distributed to shelters. A shelter is being set up in Jackson specifically for pregnant women and those who have just delivered. We will be providing supplies and financial assistance to help them. Items and monetary donations may be sent to March of Dimes, 330 North Mart Plaza, Suite 1, Jackson, MS 39206." I'm going to do a box for these folks, I think.

MOD specialists are assisting with direct service and support for over 100 sick and premature babies who were transferred to Women's Hospital in Baton Rouge, and is working to obtain much-needed clothing and other supplies for displaced pregnant women and babies in the Gulf Coast area ravaged by Hurricane Katrina. Staffers are also working to ensure that those Katrina survivors who are pregnant, breastfeeding, or are parents of newborn babies, receive essential information on nutrition, safe water, safe preparation of formula and the signs and symptoms of premature labor. Help will be needed over the next several months as the number of premature births is expected to rise along the Gulf Coast due to the aftermath of Katrina.

MOST (Mothers Of Super Twins) online says that needs for expectant and new mothers include basic preemie needs such as new infant car seats, breast pumps and other lactation needs, preemie and newborn diapers and clothes, Dr. Brown and Avent bottles, twin, triplet and quad strollers, and new crib linens such as sheets, mattress pads, etc."Tthis is a very partial list," the group says. "To learn more, contact the MOST office. Credit card donations can be made through MOST and designated toward this MOST Outreach: Adopt a Family program (100% of the donations go to the program, although they may need donors to help offset the cost of shipping). MOST e-mailed all families in La., Ala., and Miss. and asked if they could let us know how they are doing hoping that many were fine and still had access to e-mail They've also had area coordinators contact their local hospitals to see if any expectant mothers or newborn multiples were transferred to their facility for care.Volunteers organized local families that were available to reach out to these families in need. MOST also asked all of our members and friends of MOST (via a press release and notice on the website) to let them know if they'd heard of any families of multiples or preemies who may have been displaced, lost a family member, or in any type of need because of the storm and to please let us know, among many other attempts to help. "We want to try to get ahead of the game and start planning for the future needs of these families. All suggestions are welcome," MOST says. "Please e-mail us at Info@MOSTonline.org." Among their families: Expectant first-time parents of triplets; the mom is currently (9/9/05) 30-weeks gestation and hospitalized in Ala.; they lost their home. Family 2 are expectant parents of twin girls (31 wks presently 9/9/05) and have a son who is 4 yrs old. The mom is presently hospitalized in WV. Family 3 is a very young military family with toddler twin boys (about 1.5 yrs) and a 3-yr. old daughter presently relocated to Mass.' "they lost their home and are in need of EVERYTHING!" Likewise Family 4, a young couple with 16-month-old twin girls. Family 5 has identical twin girls born just two weeks ago, and at least one older child, a girl born in 2001; they lost their home. Also contact Maureen A. Doolan Boyle, Executive Director MOST, PO Box 306, East Islip, NY 11730, www.MOSTonline.org.

NAAR is banding together with other organizations within the autism community by partnering with Autism Cares-Katrina. Visit http://www.autismcares.org/ if you wish to make a donation of money, shelter, clothing, transportation, or other services to the many displaced families affected by Hurricane Katrina. Additional resource and support information may also be found through The Katrina Disaster Relief Information for People with Disabilities website at http://www.katrinadisability.info/.

$25,000 is needed to ship supplies and equipment, including $10,000 to get the first two trucks rolling. Send donations to Portlight Strategies Inc., Katrina Disability Relief, 3614 Back Pen Road, Johns Island, S.C., 29455, 843-817-2651. Send supplies (NOT CASH) to Paul Timmons, Katrina Disability Relief, 4900 Lewis Road, Stone Mountain, Ga. 30083, 843-817-2651. Make checks payable to Portlight Strategies Inc. (a private non-profit 501c3 entity, Tax Exempt number #58-2299951. Guidelines for shipping supplies: anything mechanical needs to be working; boxes need to have inventory listed both in indelible marker on outside and a list on the top of the interior; clothes need to be clean and appropriate for the environment; if you want proof of your donation for tax purposes, you must include name and FULL address. And join katrinadisability@yahoogroups.com to begin to cut down on e-mail traffic.

The Department of Health and Human Services has a toll-free hotline for people in crisis: 1-800-273-TALK(1-800-273-8255). Callers will be connected to a network of local crisis centers across the country and receive counseling from trained staff at the closest certified center.

Says Bill Prickett of the Louisiana School for the Deaf (P.O. Box 3074, Baton Rouge, La., 70821, (225)769-8160 or instate (888)769-8111, fax (225)757-3424, bprickett@lalsd.org, www.lalsd.org), "Your e-mails are finally getting through to us. Our heartfelt thanks to all of you for your concern and support in this tragedy. It is sinking in to us that this is not something that will go away next week. Our lives here in Louisiana have changed and will never be the same." LSD's campus and facilities came through unscathed, allowing them to locate New Orleans-area students and get them back in school. They have contacted students and their families in Florida, Tennessee, Arkansas and Texas, as well as all over Louisiana. They are beginning to make their way to Baton Rouge to bring their child back to school. In most cases, this means providing shelter for their families. They recently 11 families (49 people) living in one of their dormitories, a number that fluctuates daily as families find apartments to rent and move out, or they connect with relatives outside Baton Rouge and move on. They're also housing LSD staffers and their families who lost their homes or have been without electricity for an extended period. "Re: the deaf community for whom we've provided shelter, this number has also fluctuated," he adds. "We've had as many as 12 or more. They come here, catch their breath, eat a hot meal, wash their clothes, get a hot shower and an air-conditioned night's sleep. We then help them contact friends or relatives who can take them in." The local service providers (Louisiana Commission for the Deaf, Louisiana Association of the Deaf, Louisiana Career Development Center, Catholic Deaf Center, First Baptist Deaf Church, Assembly of God Deaf Church, and Louisiana School for the Deaf) are coordinating services for deaf refugees. The Baton Rouge Deaf Action Center will do initial screening and connect the deaf refugees with Food Stamps, Unemployment, Social Security, FEMA, counseling and comforting, etc., and provide interpreters. LSD will provide temporary housing, food and clothing until the refugees can be relocated with friends or relatives. They expect a large number of homeless deaf people to be processed through LSD. The most-pressing need is monetary donations. The group is limited by laws and regulations as to how it can spend our state appropriation. Monetary donations earmarked for a specific purpose (hurricane relief) can be spent as needed. LSD has established a special account through which these donations will flow, the money going for clothing, toiletries, and food for the families of LSD students and the homeless deaf people who will be housed at LSD. Donations in lieu of material goods give LSD the flexibility to purchase the exact items and sizes needed, sometimes in bulk for added savings. such donations will also go for gas, and bus and train tickets to reunite these people with their friends or relatives, if possible. Make checks payable to the Louisiana School for the Deaf, with a notation "for hurricane relief," and send to Prickett's attention. "Please remember us," he adds, "in your prayers".

From the listserv Preemie Child, a mom writes, "My Sarah, an ex-32.3-weeker, now 6, just came into the room and plopped down her two piggy banks that are full of pennies and a few nickles, dimes, etc., that she has been saving for, well, a very long time. She said, "I think there should be about 18 dollars in here (which was so cute, being she has no clue as to how much is in there, and neither do I!). Do you think that would help out?" I'm so proud of her. I didn't even say anything to her about it, she just thought of it all on her own, which makes it that much better. We are going to take it up to the bank and cash it in for dollars, so she can donate it. She can't wait!"

The Schafer Autism Report has run stories on 900 autistic children being affected by Katrina in just Louisiana, and on the education rights of displaced and homeless children. They've also posted a list of some missing autistic children. The eyes mist at this, but look at it if you think you can help.

Stephanie Holbrook, on behalf of the National Library Service, Library of Congress (holbroos@fleishman.com, 202-857-2203), writes about a free resource for host families who take in families with children who are blind and physically handicapped. "As students return to school all around the country, host families who take in children with disabilities may not have the resources to provide the materials for blind and physically handicapped students. Talking Books, a free program offered by the National Library Service for the Blind and Physically Handicapped (NLS), Library of Congress, helps provide eligible students with the reading materials they need. Through its national network of cooperating libraries, NLS mails books and magazines on cassette and in braille, as well as audio equipment, directly to the employees at no cost. Host families may call 1-888-NLS-READ (1-888-657-7323) or go to http://www.loc.gov/nls/find.html for a directory of cooperating local libraries participating in the Talking Books program and for enrollment information.

Attorney Michael A. O'Connor from the Council of Parent Attorneys and Advocates (COPAA) just issued a legal memorandum for Katrina parents, advising special-needs parents of their rights as displaced people and how to get special ed services for their kids. See www.copaa.org/news/hurricane.html.

The Astrodome is full, remember, as are many other places in Houston, and they might need help. A complete shelter list is available from the Red Cross (866-GET-INFO or 713-313-5480). The Houston Food Bank, (713) 223-3700, is in need of items to help victims: paper goods such as plates, cups, diapers and tissues; cleaning supplies, such as bleach, Top Job, or Mr. Clean; bottled water (no glass containers); single-serving snacks such as Pop-Tarts and cereal bars; peanut butter; heat-and-eat foods such as chili, stew, canned pasta with sauce, and canned vegetables, any other single-serving foods that don't require refrigeration; Meals Ready To Eat; baby formula; and personal hygiene products. Evacuees at the Astrodome can receive mail at: Evacuee's Name, General Delivery, Houston, TX 77230. The Coast Guard in Houston is asking for donations to help about 50 workers in New Orleans on rescue efforts who are running out of basic supplies. Items in need include: T-shirts, underwear, toilet paper, wipes, soap, first-aid kits, bug spray, foot powder, bottled water, sports drinks, coffee, power bars, granola bars, cups of dry soup, sleeping bags and pillows, and D and AA batteries. I don't know how you'll get it to them, but maybe start with http://www.cgmahq.org/

Federally funded Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) are located in each state to provide training and information to parents of infants, toddlers, children, and youth with disabilities and to professionals who work with children. See www.taalliance.org/Centers/index.htm. The Protection and Advocacy (P&A) System and Client Assistance Program (CAP) comprise the nationwide network of Congressionally mandated disability rights agencies See http://napas.org/aboutus/0507PA_CAP.htm. The National Association of State Directors of Special Education, "Homelessness and Students with Disabilities: Educational Rights and Challenges" is at www.nasdse.org/publications/homelessness_and_SWD.pdf.

The California Foundation for Independent Living Centers (CFILC) has set up a relief fund on its site, www.cfilc.org/donatenow. Funds will go to Independent Living Centers in Louisiana, Mississippi and other areas aiding in the relief effort of people with disabilities.

To learn about the work of the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities, visit www.dhs.gov/DisabilityPreparedness.html. Good overview on what's going on.

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