Practical Information for Parents and Caregivers
Most people are scared of the unknown. Your child's visual impairment seems frightening because you more than likely have little or no knowledge about visual impairment or blindness.
The resources and suggestions given here are meant to give you information that will be beneficial to you. Your goal should be to focus on making your child happy, self assured and inquisitive, just as you would do with any child. Early contact with parent groups may be one of the most important things you can do to help yourself with this goal.
The organizations and resources listed here will vary in their use of the terms visual impairment or blind, but all of them are eager to provide you with information. Read the small paragraph describing each to see which of these items would be most helpful to you now. Again, it is extremely beneficial to meet other parents of blind children and also to talk to adults who are blind.
Your best source of information regarding your child's vision is your pediatric ophthalmologist. The other resources included here are primarily educational.
INFORMATION ABOUT FREE MEDICAL AIR TRAVEL
Air Care Alliance -800-296-1217 http://www.aircareall.org/
Air Lifeline (877) air-life or www.airlifeline.org
American Airlines- Miles for Kids (817) 931-6890 or (817) 963-8118
Twice in a lifetime free flights for child and both parents - leave message with all details (you must have access to a FAX machine)
Angel Charity Network -www.aircharitynetwork.org
Angel Flight - For non-emergency transportation for medical treatment done by geographical area within the U.S.For specific regions and current phone numbers go to their website at: http://www.angelflight.com/ or call 918-749-8992
Hope Air (Canada) 877-346-HOPE or mmail@hopeair.org
Lifeline Pilots -309-697-6865 -http://www.lifelinepilots.org/
Mercy Medical Airlift (757) 318-9175 or 888-675-1405
Midwest Express Miracle Miles -Natalie Fuerst at 1-414-570-3644 -One free flight, thereafter flights are discounted. No financial requirements.
Miracle Flights for Kids: (800) FLY 1711 or (702) 261-0494-http://www.miracleflights.org/
National Patient Air Transport Hotline (800) 296-1217-Helps people find free or reduced rates for air travel for medical purposes. Available 24/7. mercymedical@erols.com- http://www.patienttravel.org/
Northwest Airlines Request an Application:
Call (612) 726-4206 to request an application for KidCares travel. This would be the most likely source for those of you planning on coming to Detroit to see Dr. Trese or Dr. Capone.-http://www.nwa.com/corpinfo/aircares/about/kidcares.shtml
Southwest Airlines (214) 792-4103 or (214) 904-4103 -Contact: Tracie Martin
Twice a year for child and both parents
TWA Operation Lift Off (314) 895-5563 - Contact: Liz Martin or Brian Zahorik- http://www.operationliftoff.com/
Virgin Atlantic (800) FLY-4-LES
Contact Ted Hollingsworth - Special Needs Dept.
For comprehensive listings, or to ask for travel information from a specific area you may also try: Air Care All- www.aircareall.org or 888-260-9707
PATIENTS WHOSE COMMERCIAL FLIGHTS TAKE 12 HOURS OR MORE SHOULD CONTACT THEIR TRAVEL AGENT AND ASK ABOUT ROUND-THE-WORLD RATES VERSUS RETURN FLIGHTS FROM DETROIT. LARGE SAVINGS MAY BE AVAILABLE WITH BETTER ACCOMMODATIONS (BUSINESS VS. ECONOMY CLASS TRAVEL).
For further information on free or discounted airflights see: http://www.actiondonation.org/articles/Miracle_wings_for_kids.html
INFORMATION ABOUT FREE HEALTH CARE FUNDING
The United Healthcare Children's Foundation (UHCCF) has announced that new grants are available to help children who need critical health care treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans. The foundation aims to fill the gap between what medical services or items a child needs and what their commercial health benefit plan will pay for.
UHCCF, a nonprofit 501(c)(3) charity, provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics, and eyeglasses. Parents and legal guardians may apply for grants of up to $5,000 each for child medical expenses and equipment by completing on on-line application on the UHCCF Web site.
To be eligible for the grant, children must be 16 years or younger. Families must meet economic guidelines, reside in the United States, and be covered by a commercial health benefit plan. The family's health care provider must submit a letter to the foundation that defines the child's medical condition and supports what the family is requesting. The family, however, must apply for the grant themselves.
For further information contact: www.uhccf.org
Social Security (SSI) Information:
To learn if your family qualifies for SSI payments go to: www.ssa.gov/pubs/10026.html
Sources for financial aid for eye surgery and glasses
Most of these resources will be for U.S. citizens: http://www.nei.nih.gov/health/rop/
ACTIVE LEARNING
Active Learning Materials can be purchased through the following suppliers:
www.lilliworks.com or
Funktionssentret, Litleasveien 41, 5090 Nyborg, Norway. Phone: +47 55 39 20 80
or FAX: +47 55 18 77 60
Books and FIELA Curriculum from:
Vision Associates - email address -
TO SEE ONE MOM'S PERSONAL EXPERIENCES WITH A LITTLE ROOM VISIT:
http://members.aol.com/LSWebDesgn/LNroom.html
FREE BRAILLE BOOKS IN ENGLISH OR SPANISH
SEEDLINGS...BRAILLE BOOKS FOR CHILDREN
Book Angel Program
Register here to win two free books in Seedlings' new Book Angel Program! Books will be sent starting in January of each calendar year when your child's name is drawn and as time and materials allow.
http://www.seedlings.org/special.php
The Rose Project
World Book Encyclopedia Articles in braille. A free service for blind students in grades 1-12.
NATIONAL BRAILLE PRESS
Book bags are available for all U.S. children, birth to seven years of age. For further information either contact aruell@nbp.org, or call (888) 965-8965, ext. 34, or visit www.nbp.org/ic/nbp/readbooks/index.html
NATIONAL TELEPHONE SUPPORT GROUPS
Tele-Support Groups for parents of children with visual impairment are open-ended, informative and supportive discussions of issues and topics of concern for parents raising children with visual impairment. These groups are composed of parents with children who have the same eye conditions. They are professionally facilitated and are offered at no cost to parents. They meet by phone on a weekly basis.
Registration
To register online go to: http://www.jgb.org/programs-parent-tele.asp
To request additional information, or to make a referral, please contact:
Daniel Callahan
Phone: 212-769-7815
E-mail: parent-groups@jgb.org
INFORMATION ABOUT FREE ACCESS PASSES TO NATIONAL PARKS AND FEDERAL RECREATIONAL LANDS
Lifetime freepasses area available for any U.S citizen or permanent resident. For further information to to:
http://www.nps.gov/pub_aff/access/access_pass.htm
CAMPING FOR THE BLIND AND VISUALLY IMPAIRED
A great article with a list of camping facilities can be found at:
http://www.americanprofile.com/article/22236.html
Although not exhaustive this link provides information on camps available for children who are visually impaired within the United States:
http://www.kidscamps.com/special_needs/visual_impaired.html
GUILDSCHOLAR SCHOLARSHIP PROGRAM
Applications accepted for college-bound legally blind students at the end of their junior year.
To apply go to:
www.jgb.org/guildscholar.asp or contact guildscholar@jgb.org
INFORMATION ABOUT FREE PHONE CALLS IN MICHIGAN
Free phone calls to other parents of visually impaired children or to your child's doctors are available by dialing:
(800) 359-3722. Calls are limited to 30 minutes.
The Blind Children's Fund, in collaboration with the Ingham Intermediate School District and Early On is making it possible for Michigan parents of infant and preschool blind children to order one FREE copy of each of the following books:
Get A Wiggle On
Move It
Learning to Look
"Lessons" With a Child Who is Blind
To receive your free copy, send your name, child's name, age, vision diagnosis, address, and phone number to:
Blind Children's Fund
311 W. Broadway
Suite 1
Mt. Pleasant, MI 48858
989-779-9966 Phone
989-779-0015 FAX
A donation of $3.00 to cover shipping and handling will be appreciate
