FamilyConnect™

For parents of children with visual impairments

Ask the Experts

Did I mention social networking?

Social networking, social networking, and more social networking! My name is Joe Strechay and I work for the American Foundation for the Blind as an associate in the AFB CareerConnect® Program. I am grateful to have the opportunity to share something that I am passionate about with you through this blog. Encourage your children to network and connect with other kids, students, adults, and professionals who are visually impaired.

There are many benefits to children with visual impairments interacting with each other. These can range from promoting the adjustment to blindness, finding friends with similar life experiences, and just making more friends. The truth is that other children with visual impairments can relate on many levels with each other. They most likely have dealt with similar situations at school, home, and in life. Because blindness is a low-incidence disability, children with vision loss are most often isolated from each other and we must find opportunities for interactions.

I strongly suggest that you and your family attend events where other children or teens with visual impairments will attend. This can be such a great experience for the entire family because it allows a visually impaired child to be in the majority, which is rare experience for them. Events could be hosted by statewide organizations of people who are visually impaired (NFB, ACB), parent organizations (NAPVI, POBC), or an event from your state's blind services program. Some schools for the blind offer camps or events that are open to students from outside of the school. The FamilyConnect website maintains both a directory of agencies who are active in your state and a calendar of events where you will find a variety of activities listed.

Getting involved in Paralympics sports is a great opportunity for students to network with other athletes who are visually impaired. The United States Association of Blind Athletes has representatives in most states, and they would be a great organization to contact. Most states have athletes who participate in Paralympics sports. These organizations sometimes provide clinics and expos on these sports. There are beginners skiing clinics—and more—available nationally.

The American Foundation for the Blind offers a number of message boards aimed at people who are blind or visually impaired. One of these message boards is called TeenConnect. TeenConnect was developed so teenagers could interact with each other regardless of where they live. Teens have the freedom to discuss most issues and there are a number of regular users ranging in age from 12 to 22 years old. The teens share advice on issues that they are currently experiencing including technology, career, school, college preparation, hobbies, blindness, and more.

The TeenConnect message board is monitored daily by AFB Staff to make sure the content and language are appropriate, but teenagers will be teenagers and some things slip through the cracks. We strive to provide the users with a quality experience and freedom of self-expression.

I want to make sure I mention that it is important for children with vision loss to be active in their community. Encourage your children to participate in organizations such as the Future Business Leaders of America, Distributive Education Cooperative of America, Key Club, student government, debating, model congress, Boy Scouts, Girl Scouts, sports, and more. There are scholastic sports that all students can participate in with a few accommodations.

Some social networking opportunities and resources to check out:

• The AFB Press book, Teaching Social Skills to Students with Visual Impairments, edited by Karen Wolffe and Sharon Sacks, would be a great resource for parents, families, and teachers who are hoping to help promote and teach appropriate social skills to their children. This book offers methods based on theories that have proven effective.
  
  
• AFB CareerConnect, where users can send messages to mentors who are employed in many fields. The safe message system will allow users to explore careers, interests, accommodations, and more. AFB CareerConnect offers many other resources and teen-appropriate material. Check out Aaron's Adventures in Employment and experience some entertaining educational multimedia materials.
  
  
• NAPVI, the National Association for Parents of Children with Visual Impairments is a national parents and families group with chapters around the country.
  
  
• NFB, National Federation of the Blind, is a consumer group.
  
  
• ACB, American Council of the Blind, is a consumer group.
  
  
• AFB, American Foundation for the Blind, is a national organization that offers many resources including web, publications, technology evaluations, professional development, career exploration, educational resources, content for parents/families and more.
  
  
• USABA, United States Association of Blind Athletes, is a membership organization that promotes sports for persons who are blind or visually impaired.
  
  
• Camp Abilities is a program that helps develop and conduct sports camps for individuals who are blind throughout the country.
  
  
• FBLA, Future Business Leaders of American, is an organization that allows students to learn business skills and participate in competitions.
  
  
• DECA, Distributive Education Cooperative of America, is a student organization that allows students to learn and compete in marketing-related events.
  
  
• Key Club is a service-related student organization that offers opportunities for students to give back to their school and community.
  
  
• Boy Scouts of America is an organization that allows males to learn skills, leadership, and participate in activities.
  
  
• Girl Scouts of America is an organization that allows female youths build skills, leadership, and participate in activities.

I challenge you all to get your children out and involved in social networking online and in person! Thank you for taking the time to read this blog and let me know your thoughts.

Is Your Child Ready for a Canine Buddy?

My name is Aerial Gilbert, I am the Outreach Manager at Guide Dogs for the Blind. I am also a graduate of the Guide Dogs program, working with my 6th Guide Dog, "Splash," a female German shepherd.

I was on the planning committee for the NAPVI Family conference in Costa Mesa in July and presented at the conference and gave an overview of the Youth Outreach Opportunities at Guide Dogs. After the presentation I was asked to submit the information that I covered on this blog so that you would have access to these opportunities, and also be able to have a resource to ask your questions about guide dogs. Please feel free to contact me at agilbert@guidedogs.com or by phone 415-499-4030.

K9 Buddy Program

Currently we have 50 K9 Buddies residing with families that have a child who is blind or visually impaired. We believe that a dog can make a remarkable difference in any child's life by fostering a sense of caring, companionship and a sense of responsibility through the human/animal bond. Our K9 Buddy Program matches specially selected dogs to become wonderful companions to visually impaired children and young adults. A dog can contribute to heightening of sensory development, motivating a child to learn and enhancing self esteem. The dogs come from Guide Dogs' own colony, but are not qualified to work as mobility assistance dogs. K9 Buddies are offered free-of-charge, as are working Guide Dogs.

The K9 Buddy program connects the child/family with our community of puppy raisers and other supporters. This connection is as beneficial for our raisers and other constituents as it is for the child and their family. The program also connects the family with other services provided by agencies and organizations for the blind.

K9 Buddies are primarily placed in the eight Western states—the same territory in which we have puppies being raised and the staff to support these programs.

Is your child ready for a K9 Buddy?

• The K9 Buddy program matches dogs with blind youth under 18 years of age who have been diagnosed by an ophthalmologist as legally blind or with a degenerative eye disease that will render them legally blind.
  
  
• A K9 Buddy might be a good choice for a blind youth who exhibits the emotional stability and maturity needed to care for the dog (feeding, grooming, exercising) and will treat it humanely.
  
  
• A good candidate would be one who has a personal interest in having a K9 Buddy dog.
  
  
• The applicant and family agree to be the primary care providers for the dog and to monitor and encourage the applicant to actively participate in the care of the dog. The applicant's home must have a secure backyard or dog run and be a safe environment for a dog.

The K9 Buddy Program differs from our Guide Dog Program in a few key ways:

• K9 Buddies are not trained to assist with mobility. Therefore, children who have K9 Buddies and their buddy dogs are not granted access to public places (restaurants, shopping malls, grocery stores, hotels, public transportation, etc) with their dogs under the ADA.
  
  
• Veterinary assistance and counseling services are provided only to active guide dog teams.

Families interested in applying for a K9 Buddy will be interviewed in their home to evaluate the environment as well as to determine the particular traits the family is looking for in a dog so an appropriate match can be made. After matching the family with a dog, the family will receive training and guidance from a Guide Dogs for the Blind staff member. Ownership of the K9 Buddy by the family will be granted after completion of the course of training. K9 Buddies are considered pets.

If you would like to find out more about the K9 Buddy Program and how to apply, please call the Outreach office at Guide Dogs for the Blind at 800-295-4050.

Camp GDB

Camp GDB is a 3-day camp for youth aged 14 to 17 who are legally blind. Campers will need to be able to care for their own activities of daily living. They will stay in our dormitory and share a room with another camper. Meals will be on campus and in the community. Camp GDB is free to qualified applicants, but families will need to provide transportation to our San Rafael campus.

Campers will explore the companionship, independence, and responsibility of the guide dog mobility lifestyle. They will receive hands on instruction with guide dogs with an emphasis on understanding the specific orientation and mobility skills that make for a successful guide dog user as well as the necessary fitness and endurance required for guide dog travel. They will have mentoring opportunities with successful guide dog users, including guide dog users who are other teens. Also, campers will learn about how our organization works and about the communities of support that enhance our programs. There will be plenty of opportunities for social activities and developing new friendships.

Tips for Travel with a Visually Impaired Child

Road Trip!

A driving trip or resort vacation for the whole family can be lots of fun, but how do you maximize the experience for a child with a visual impairment? Below, instructors Sue Melrose and Ginger Irwin, from The Hadley School for the Blind, which offers free distance education courses for family members of a person with a visual impairment, provide their expertise and some ideas to make your family getaway fun for everyone:

Share the plan: Keep the whole family involved in the travel planning process. Children and teenagers who know where they're going and what to expect are more willing travelers, especially if they have the opportunity to help pick out fun activities.

Map it out: Once plans take a definite shape, create a simple, accessible map of the travel plan for your child to trace with his/her finger. If traveling by car, a map consisting of paper and string, pipe cleaners and tape, or string over an existing map will do. This helps children understand the travel plan, track the distance traveled, and learn about maps as a useful tool.

Keep busy en route: If you can't see out windows, the world becomes very small when you get in a car. Combat confined-space fatigue by creating a travel bag with favorite activities like braille playing cards, an audio player, puzzles, and reading materials. "Making braille notes as little surprises along the way can make the trip more fun," says Ginger Irwin.

Stop and stretch: Be prepared to make more stops on the trip to get fresh air and take short walking tours of new locations, especially points-of-interest. Go on small gathering missions and collect simple tactile souvenirs provided by Mother Nature, including interesting rocks, pinecones, leaves, and sand. Melrose has a collection of bottles of sand from many road trips throughout the years.

A replica can be just as good: Trips to the gift shop are essential if you're at a large tourist destination. Buying miniatures of your location, like the Statue of Liberty, Mount Rushmore, or the Golden Gate Bridge, can help your child understand and tactically navigate your location.

Inquire about special tours: If you plan to go to museums, always call ahead and inquire about tours and accommodations for people with visual impairments. It is best to speak with management, as seasonal employees don't always know about these opportunities. Some museums and tourist attractions offer audio tours or special "behind the scenes" tours that are not advertised. The same rule applies to special activities and day trips off cruise ships and resorts. By calling ahead and explaining her visual impairment to managers of different day trips during a cruise, for example, Melrose was able to swim with dolphins and go zip-lining. "Explaining my abilities and limitations as a blind person helped the tour staff understand that it wasn't a risk to let me do these activities, they just had to communicate with me. It's important not to assume you won't be able to participate in fun vacation activities because you're visually impaired."

About Hadley: Founded in 1920, The Hadley School for the Blind's mission is to promote independent living through lifelong, distance education programs for people who are blind or visually impaired, their families, and blindness service providers. The world's largest educator of braille, Hadley enrolls more than 10,000 students in all 50 states and 100 countries each year. For more information, visit www.hadley.edu or call 800-323-4238.

Sharing the Holidays with Your Child Who Is Visually Impaired

Again it is the time of year that has families gearing up for another holiday season. For those of us with a child who is visually impaired we not only have to think about organizing our families, but also how to include our visually impaired children in a way that will be enjoyable to them. As a mom of one such child, I happen to have a few thoughts on this very topic. Important things to remember over the holidays are keeping with tradition, teaching in the moment, adaptation, and time management.

I understand that my four-year-old son who is blind, Eddie, doesn't always love every family activity, but neither does my older child who is sighted. However, I feel it is very important to stick with family traditions. I don't mean those traditions handed down to you that you've always hated and now think your children should suffer through. (Admit it; we all have a few of those.) I'm referring to family traditions that are important to you and to your family and give meaning to the holidays.

It might be hard to take our children to a big Thanksgiving dinner because it is loud, chaotic, and totally out of their routine. But, if family gatherings are something you like to do, you should definitely attend and take the opportunity to work with your child on adapting to new social settings. Show them around the unfamiliar house, introduce them to everyone (or have them say hi to family they know), and help them feel comfortable in their surroundings. Families should not skip traditions due to their child with a visual impairment; we all have been surprised to find new things they like that we never thought they would.

One reason I find it hard being the parent of a visually impaired child is because you are always teaching, which happens even during the holidays. As all of us know, without sight a child with a visual impairment needs everything explained to them in detail. Lengthy explanations can be tiring, and for those with visually impaired children that are communicating verbally, the questions can seem endless. That is why it is important to take advantage of common holiday occurrences by teaching in the moment.

With three children, I hardly have time to sit down with Eddie and explain all aspects of the holidays. So, while we are selecting a Christmas tree, baking cookies, or making a turkey I try to describe every step of the process and let him get his hands dirty. For example, in the process of preparing the turkey, I let him feel the skin and discuss the parts of the turkey. This includes where the stuffing goes, even though that explanation tends to make stuffing a little less appetizing, understandably. Including him in the process is surprisingly easy. Making the turkey is something I'm going to do anyway, so I might as well have him experience the process along with my sighted children.

For children who are visually impaired, we also are often required to adapt activities so they can enjoy them, which is just as true during the holidays. For instance, we all have our favorite Christmas stories and many kids just like to listen to those wonderful tales, but we need to remember to let them experience the stories through braille or real objects as well. For braille readers, be sure to get copies of these stories in braille so they can read aloud to the family. For all children with visual impairments, including nonreaders, simply take your favorite book or song and find as many real objects from that story that you can and put them into a bag. Then, as you read the book or sing the song, you can hand your visually impaired child the actual item mentioned. Since they are not able to view the pictures, it will help their imagination define what they are hearing.

The final item I want to mention is time management. Adapting activities, trying to maintain traditions, and teaching in the moment do require some extra time when considering our children with visual impairments. We tend to rush our way from Thanksgiving through the New Year, so I recommend trying to stop, take a breath, and enjoy the season.

Instead of cramming the month of December with multiple plans, pick your favorites and take the extra time needed to help your VI child fully experience this time of year. Revel in the look of understanding we get from our kids when we do an activity justice. I feel gratification in explaining something in its entirety and feeling I succeeded and that success is multiplied during the holidays.

I've only mentioned a couple quick examples of how I include Eddie, but we would all enjoy hearing how you include your child with a visual impairment in holiday activities. Do they help you bake cookies, wrap presents, or make ornaments? If you have any great suggestions or tips please post them to share with the rest of us. Your pearls of wisdom might be just the idea someone else could use to make this holiday season truly memorable.

Celebrating National Disability Employment Awareness Month

I am delighted to post this message as the majority of my career has found me speaking with families about the importance of focusing on skills that lead to employment. As you and your child travel together through the school system there will be many terms and phrases that may seem foreign to you. Transition plans, expanded core curriculum, and assistive technology are all important terms that need to be understood because they have a direct impact on employment. It is our hope that you may use both the FamilyConnect™ and AFB CareerConnect® web sites to assist you in navigating your local school system. With October bringing National Disability Employment Awareness month, it is a time for a sharp focus on the important role families play in this effort.

It is understood that most children grow up and in some fashion end up employed. Adults with vision loss hold jobs in almost every imaginable occupation including medicine, science, business, and engineering to name just a few. Employment may occur through careful planning, connections and networking, or just plain happenstance. Employers also have a natural expectation that employees will be able to get to work, use the equipment found in that setting, and be a part of a team.

Individuals with vision loss may face barriers to these natural expectations. For instance, have they learned the necessary travel skills, and if so, is the job located on a transportation system? Is the equipment adaptable and will the new employee know how to use them? Will co-workers react in a normal way or will the new employee with vision loss encounter unexpected social challenges? These are all issues in which you and your child's educators play a major role in preparing your children. But, take heart! The path to employment has been paved by many highly successful people, many of whom may be contacted through the use of the mentor component within AFB CareerConnect.

With this blog, hopefully, we can open a dialogue in which we can talk about how children with vision loss can grow up and become successfully employed in jobs or careers they are good at doing and really enjoy. You may wonder how someone with vision loss is able to do typical tasks at work. I invite you to visit the CareerConnect virtual worksites to see adapted work settings. As well, you may view videos showing visually impaired employees in both office and retail environments. If you are still wondering about some things after seeing the worksites and/or viewing the videos, this would be a good time to connect with one of our CareerConnect mentors to do an informational interview and ask them your questions.

CareerConnect has many audio interviews of adults with vision loss who discuss their careers with teens and also has over 30 Success Stories that will inspire you. FamilyConnect has content that speaks to how you, as a parent or family member, can encourage your child to develop their skills and independence at every age. Another tip we'd like to encourage you with is to use the FamilyConnect message boards to communicate with each other as questions arise.

It is important that we encourage the development of skills and independence at an early age. Through the use of available resources you can enjoy a journey you never thought possible—negotiating the pathway to independence for your child and realizing that most anything they can imagine is possible!

Caitlin's Top 10 Rules for Incoming Freshmen

Hi, all!

From my vantage point as a soon-to-be-sophomore (at the original time of this writing, I have just one more week of my freshman year to plow through), I present you with the top ten things I have learned this year at college vis-a-vis being a visually impaired freshman.

Feel free to redistribute, enjoy, and (hopefully) snort with laughter. Here's hoping that my brainless mistakes will help the kids who come after me. All I ask is that you think no less of me after reading this list, which flaunts some samples of my own ineptitude in a most vivid manner.

I Remain Yours Most Sincerely,

Caitlin Hernandez

Caitlin Hernandez's Top Ten (10) Rules That Every Incoming Freshman (Who Happens to Be Blind) Should Most Definitely Know (also known as, What They Don't Tell You at Freshman Orientation)

What About Description for Movies or Educational Media on DVD?

It's a good news, bad news story. The good news is that description is beginning to be included on DVDs, but the bad news is that only a few titles include description. The situation may be getting better for educational media used in classrooms, but first, a quick discussion of DVD movies and TV shows.

Since many movies are now coming to theaters with description, you'd think that the releases on DVD would also have the description. Unfortunately, you'd be wrong. Only a handful of movies have been released with description and it may not be obvious from the listing of features on the DVD.

Since description has already been done for so many movies, why isn't the DVD released with description? A good question indeed. I've been told that some studios claim there isn't room on the DVD to fit the description track. Sure, it's more important to have the commentary track from the director's third cousin than to make room for a description track. Maybe if we all start asking for described movies on DVD we can convince Hollywood that there's an audience interested in enjoying movies with description. After all, most movies are released with captions. And, perhaps the greater capacity provided through Blu-ray might help.

Anyway, the ever helpful folks at the Media Access Group at WGBH maintain a list of accessible DVDs.

If you're a fan of PBS programs, you may be able to find many of these with description. A good place to shop for accessible PBS programs on DVD is also at WGBH, shop.wgbh.org/category/show/3241.

Thanks to the efforts of the American Council of the Blind (ACB), I am happy to report that "The Miracle Worker" is now available on DVD with description. You'll get to experience a powerful story about Helen Keller, help show that there's interest in video description, and help support a worthy organization since a portion of each order benefits ACB. Go to www.adinternational.org.

By the way, this is the 30th Anniversary Edition of The Miracle Worker (the one based on the 1979 TV remake starring Melissa Gilbert as Helen Keller and Patty Duke as her tutor).

Besides the lack of available DVD titles with description, there is another problem with accessing described movies on DVD. The menu or list of choices that is displayed when you put a DVD in a player is currently not accessible for someone who cannot see the screen. PBS and the Media Access Group produced some excellent examples of an accessible DVD menu using spoken guidance to help the user with vision loss navigate through the menu. Unfortunately, this system is only available for a handful of American Experience programs so far. So, here's another challenge, though as I mentioned in my previous blog, we're working on legislation to require accessible controls on equipment like DVD players.

OK, I know it's summer, but it's not too early to start thinking about school. Specifically, I want to make sure that any education video shown in a classroom where a blind student is present is made available with video description. Although all educational media is not currently required to be accessible for students with disabilities (something I'm hoping we can work to change through legislation), schools must ensure that media used to instruct a student with a disability is accessible.

And, as I said, there is beginning to be more accessible educational media available with descriptions (thanks in part to funding provided by the US Department of Education) and the work of our friends at the Described and Captioned Media Program (DCMP). For many years, The DCMP has worked to make educational media accessible, initially by adding captions to media and more recently by including descriptions as well. Among other important services, DCMP loans described and captioned educational media to schools and directly to families with students who are deaf, blind, hard of hearing, visually impaired, or deaf-blind. Registration at the DCMP site is easy. Check out their profile on FamilyConnect for details.

AFB worked with DCMP to create guidelines for describing educational media. These guidelines help to explain why description is important and how to make educational material accessible through descriptions. You can access the guidelines, known as the "Description Key for Educational Media," on the DCMP site at www.descriptionkey.org.

There are organizations doing some innovative work to improve access to multimedia through captions or descriptions. For example, CaptionMax, which has developed the "Universal Access to Media (UAM)" program. Among other things, it includes a talking menu system for DVDs and something called expanded descriptions. In Expanded Description the video program is paused briefly, allowing additional time to thoroughly describe a scene. This allows more extensive description of complicated visual elements like graphs, diagrams, and on-screen text. You can see examples of their work online.

Another example of innovative educational media description can be found in the work of Bridge Multimedia. It has developed an approach called "EXTRA InfoTM" to provide important background facts and details such s set, costume or character descriptions helpful to blind or visually impaired audiences. EXTRA Info can be accessed online as streamed audio or as a scalable text file.

I know that access to video with descriptions on DVD or via the web seems complicated. And, right now, it is more complicated than it should be. Nonetheless, I hope you'll check out the many resources included here and begin to experience the satisfaction and opportunity for richer information that awaits you with described media. And, as always, I invite you to write a comment to let us all learn from your experience.

Video Description: Must Hear TV?

This week I'm providing information about video description and TV. I certainly remember spending far too many hours sprawled on the couch watching bad TV during my summers off from school. I'm not even going to share what I watched, just trust me, it was "Love Boat" bad. Fortunately, much of it I'd seen so many times before that I didn't really need any description.

These days, children with vision loss are especially at a disadvantage if they don't know what happened on the shows that their friends are watching. Like it or not, TV programs inform us, entertain us, and even set cultural behaviors and modes of dress and style. Much of this information is conveyed visually and without description; too often, blind kids are left out.

Well, I don't know if TV has gotten much better, but if you want to watch a TV show with video description, unfortunately, the news is not very good. Very few programs include description, and getting the description to actually work on your TV is also likely to be painfully difficult. But, fear not, there is something you can do to make this lamentable situation better. And, remember, on June 12, US TV stations are switching to digital from analog, so hopefully you've already prepared for the change.

First, what is the situation concerning described TV programs? The bright spot in described TV programming was, and remains, public TV, supported by the Public Broadcasting Service (PBS), which includes video description on a large number of programs. The Media Access Group at WGBH led the way here too, just as it did with describing movies, through its Descriptive Video Service®. The first video described program aired on PBS in 1990. Now, many programs for children—such as Arthur, Barney and Cyberchase—as well as popular series like Nova and Nature are regularly described. Nickelodeon provides description for "Dora the Explorer" and "Go, Diego, Go!"

Among traditional, broadcast commercial networks, CBS and Fox air a few described programs. For example, CBS offerings include crime dramas NCIS, Criminal Minds and CSI, and occasional movies or miniseries. And, if you're a fan of The Simpsons (Fox), it's described. And, several movies that air on the Cable channel Turner Classic Movies also include description.

WGBH has established a good site for information about TV programs available with video description. The site is at http://main.wgbh.org/wgbh/pages/mag/services/description/ontv/

For a brief moment back in 2002, things were different and hopes were high for more TV shows with description. Beginning in April 2002, the major networks—ABC, CBS, Fox and NBC (along with major Cable networks such as Nickelodeon, USA, and Lifetime) were required to provide approximately 4 hours each week of described prime-time or children's programming. But, the requirement was struck down by a federal court just a few months later in November 2002 and eventually description was discontinued on most of the programs that had started to include it.

The lack of described TV programs is not the only challenge. Unfortunately, it's hard to actually get descriptions to work on your TV. Video description has been provided over a special channel called the Secondary Audio Program (SAP) channel. With the transition to digital TV, the SAP channel will no longer be used. The good news is that digital channels allow for video description to be included with the digital signal. The bad news is that there are lots of barriers that can keep you from getting description. Because video description is not very common for TV programs, it's fair to say that most networks and local stations don't know about the special audio channel available for description. And, what's more, finding the audio channel among the complicated menus on your set-top box or TV controls is often like finding that needle in the haystack.

WGBH has set up a web site for digital TV issues at www.dtvaccess.org. You can find an explanation of video description and digital TV there. The Audio Description International web site, a project supported by the American Council of the Blind (ACB), also has information about video description on TV including a fairly pessimistic discussion of digital TV challenges.

So, what can you do about these multiple challenges? First, never underestimate the power of consumer requests. You should contact the networks that carry your favorite shows and ask them to provide video description. If you subscribe to Cable or satellite TV, you should contact your provider to ask how to access video description for programs like those aired on PBS where description is provided.

AFB is also working to increase the amount of TV programs with description and to make it easier to operate television receivers for people with vision loss. We are part of a coalition that is working to pass legislation that would require TV programs to include video description and to ensure that TV receivers would transmit it. The legislation would also require manufacturers of televisions and the set-top boxes to make it possible for someone with vision loss to operate controls and review electronic program guides. The proposed law is called the "Twenty-first Century Communications and Video Accessibility Act," and you can find more information about this on our web site, or on the coalition site at www.coataccess.org. Hopefully, one day described programming will be as common as closed captioning, which is now required for virtually all TV programming.

OK, your turn. Try to check out a PBS program, or one of the other programs made available with description and let us know how it goes.

Video Description and Summer Movie Fun

Ah summer, beloved by children anxious for the freedom and fun of lazy days and family time! There are indeed many great family activities to do during the summer, and Hollywood is hoping that seeing movies is high on your list. I know the new Harry Potter movie (coming out in July) will be on my family's list. This month I'm using this space to help familiarize you with "video description" (also sometimes called audio description), which is designed to make movies, TV programs and educational media more enjoyable and accessible for people who are blind or visually impaired. And I suspect, more enjoyable for their sighted family members too.

This week I'll try to explain video description and focus on movies. After that, I'll turn to the challenge of video description and TV programs and on DVDs. And, although school is winding down, I will also address video description as a method for making the video media used in classrooms more accessible (please be sure to visit our newest partner page to learn about the Described and Captioned Media Program, which I'll say more about in a later post). Finally, I hope we can have a discussion about your experience with video description.

First, a Word or Two About Me

I am AFB's Vice President in charge of programs and policy. I am also blind, having lost my sight when I was 18 months old. I am married and have two children (both of whom can see and who LOVE going to the movies and watching TV).

As a child, my parents encouraged me to be curious and indeed I was and still am. I am the guy in the room who won't stop asking questions. While I suspect that I would have been curious regardless of my vision loss, I think that everyone who is blind probably has experienced far too often the frustration of not being able to see what is happening on a TV show or in a movie. I'm sure I drove my parents and brothers crazy always asking "what happened?" while we were watching TV or a movie together, and I'm still bugging my family today with the same question. Unless you have tried watching a movie or a TV show from another room or while driving a car you might not even realize how much of a story depends on the action that takes place in between or in place of dialogue. I know that my wife and daughters look forward to going to movies that are video described so that we all get the full experience of the movie without "shushing" from other patrons and without the stress of trying to decide what to describe in a quick whisper without interfering with the dialogue.

What Exactly Is Video Description?

Video description is a technique that incorporates a recorded, narrated description of visual action and key information in a scene into natural pauses in a program's dialogue (WGBH, a public broadcasting operation in Boston, brought the concept of description to TV and movies in 1990). Now, new movie releases often come out with video description and/or closed captions (the technique for providing access for people who are deaf or hard of hearing to see captions of the dialogue). You can see and hear some examples on the WGBH web site:

• A described clip from "Horton Hears a Who"
• A described clip from "The Lion King"

If you are interested in finding out about movies being released with video description, the best place to go is the "MoPix" website at www.mopix.org (established by WGBH). If a theater is equipped with MoPix technology, a blind customer simply goes to the theater, obtains a pair of headphones at guest services, and listens to the description of onscreen visual action taking place during the movie (through the headphones) while listening to the movie audio in the theater. Generally, the description is timed so that it doesn't interfere with the movie dialogue and sound effects. Because the description is transmitted through special headphones, sighted patrons are not disturbed by the additional audio track. This way, the movie can be enjoyed by moviegoers who are blind and sighted simultaneously.

Unfortunately, not every community has a MoPix-equipped theater. I'm lucky to live in a place where we regularly attend movies at four convenient, MoPix-equipped theaters, but I know this isn't true, yet, in very many places. However, you can change this by working with your local theater to urge them to add the technology. Be warned, it probably won't be easy, but there is a great story on the MoPix website about how it can be and has been done successfully.

Not every movie comes out with video description either. But, an increasing amount do. Right now, if you can get to a theater with the MoPix technology, you might be able to choose among such movies as "Up," "Night in the Museum 2: Escape from the Smithsonian," "Star Trek" and others. And, you might be surprised to find that some movie studios will agree to add description if asked. We actually requested description for two movies, and the studios agreed to add it before the movies were released. You can read about the story on the AFB blog.

One other caveat: The MoPix headphones I've used aren't perfect. They're kind of bulky (pretty old school for iPod users) and you have to balance the headphones on the edge of your ears so you can simultaneously hear the movie soundtrack along with the narration. As is true of all technology, I believe that as more theaters add Mopix and more consumers seek out theaters with the technology, the headphones will be improved due to customer demand.

OK, your turn, I'd like to hear from families about your experience with video description. How was the description experience? If you can, please take in a movie this weekend with video description and write to tell us about it.

Space Camp: Where Blind Kids Can Reach for the Stars

Hi! My name is Dan Oates and I currently work at the West Virginia School for the Blind as an Educational Outreach Specialist. I have been in that position for 14 years and for the previous 14 years I was an Orientation and Mobility Instructor.

Since 1990 I have had the privilege of working with the staff at the U. S. Space and Rocket Center in Huntsville, Alabama, as a consultant for their programs for special populations. I initially started with the program for the blind and visually impaired called Space Camp for Interested Visually Impaired Students (SCIVIS) and since have assisted with programs for other populations. Most recently, I helped co-found Little People Space Camp, which just aired on The Learning Channel program "Little People, Big World" in April of 2009. Everyone gets 15 seconds of fame and that was mine! Now that it is over and the booking agents haven't called, I can get back to my life and realize that acting isn't my strong suit.

SCIVIS provides a camp-like experience for children and adults based around the central theme of astronauts or aviation. There are two possible tracks: Astronaut Training and Pilot Training (based loosely on the "Top Gun" theme). In each track there are programs for children at the elementary, middle, and secondary school level.

Space Camp runs throughout the year with students attending from all over the world. Our program, SCIVIS, occurs during the later part of September each year and attracts between 150-200 students each year. Many foreign countries have sent children in the past—Canada, Australia, Ireland, England, to name just a few.

I am often asked, "Why should my child go to a program just for the blind and visually impaired when they are placed in a 'mainstreamed' situation all year long?"

This one takes a while to explain but I'm assuming that a blog allows one the time to do this. When I first became involved in 1990 I learned that the program stressed math and science, and I thought this was a great place to learn those areas of a curriculum. As the years passed and as I got wiser, I began to notice something. Campers from the mainstream setting don't get to spend enough time with their blind and visually impaired peers, and when they do they really enjoy it. All kids need to spend time with their peers. Blind and visually impaired kids are lucky to have two peer groups—their sighted peers and their blind or visually impaired peers. Spending time with each is important.

So often kids who are in the mainstream environment may be the only blind or visually impaired person in the school, county, or district. I've heard more than one child over the years with albinism say, "Look over there, Mom, there's someone like me!" Powerful comments, and Space Camp gives kids a whole week to explore "someone like me" doing really cool stuff.

Space Camp obviously isn't the only possible camp experience for our children, but what it does provide is a chance to be surrounded by some of the coolest simulators in the world.

The other question I often get is why our program runs in September, during the school year and not during the summer. Space Camp's peak season is the summer and there are about 600-800 campers there each week from the middle of June to the middle of August. Tuition at that time is about $200 to $300 higher than our program in September. Also the adaptations that are made for the SCIVIS week are many, and those could not occur in an environment of 600 other students.

All of the programs are closely monitored by Space Camp's Education Director. National Standards for Math and Science are closely followed by all programs offered to children in grades 4 through 12. If you think about it, your child is just transferring from one school to another for one week and learning specific curriculum in a couple of content areas. Don't know if that helps, but it has provided some assistance in the past. Each district takes a different spin on how out-of-school learning occurs and what is defined as an excused absence.

Please feel free to ask me any questions you have about Space Camp, and I hope to see some of your children there in the years to come!

Assistive Technology: How Do You Decide What Tools Your Child Needs?

Hi, my name is Ike Presley. Yes, I am kin to Elvis, but not close enough to count...ninth or tenth cousins. Wait till you hear me sing! No, maybe you don't want to do that. Anyway, I would like to have a discussion with you about the use of technology by youths and adults who are blind or visually impaired. This topic is referred to as assistive technology (AT) and is one of the subjects in the Expanded Core Curriculum (ECC) that is essential to the education of students who are blind or visually impaired.

I am currently a National Project Manager for the American Foundation for the Blind in our Atlanta office and have just completed a book for AFB Press titled, Assistive Technology for Students who are Blind or Visually Impaired: A Guide to Assessment, with my co-author Frances Mary D'Andrea.

I was born into a family with a history of congenital cataracts. Somehow Elvis missed this part. Anyway, it's all over my family: brother, cousin, uncle, niece, grandfather, and several of his brothers and sisters. I received very few services during school, but I'll go into that in another post.

After completing my Masters at Florida State University I moved to Atlanta, GA, and began my career as a teacher of the visually impaired. I taught as an itinerant teacher for four years in one school district and then two more years in a neighboring district.

Then I finally got my dream job, a high school resource room for students who are blind or visually impaired. I taught at this school for 7 years where all my students took vision as one of their classes. I loved getting to have the students for several years and getting to work with classroom teachers who were learning how to meet the needs of our students.

I left education in the late '80s and became a technology instructor at a rehabilitation center for adults who are blind of visually impaired. I did this for about 4 years and then went back to education as an assistive technology specialist for the Georgia State Department of Education. On this job I traveled around the state of Georgia and conducted assistive technology assessments of students who are blind or visually impaired. I also had the pleasure of training many of the teachers on various technologies and how they could teach them to their students.

In 1999, I started working for the American Foundation for the Blind (AFB). Since then I have learned many more things about technology and have had many opportunities to present on AT at various conferences in the US, Canada, and the UK.

Please don't get me wrong. I'm not telling you all this in an attempt to sound important, but to let you know that I have been very fortunate in my life to have many opportunities to not only use a good deal of technology, but also many opportunities to learn about how others are using AT for educational and employment purposes. That's why I think the good folks at FamilyConnect asked me to be a guest blogger.

There are so many great technologies currently available that it is very difficult to know which one is the right technology tool for your child. I am often asked, "What technology should my child be learning?" I usually ask if their child has had an assistive technology assessment. An AT assessment is designed to provide you and your child's IEP team with recommendations for technology tools that can assist the child in completing educational tasks. The AT assessment is where you want to start in trying to answer that question.

I will be happy to answer questions in this area during the next few weeks. I'm hoping that this will become an ongoing discussion. In my upcoming posts I'll talk about the process of conducting an AT assessment. This will not only cover information about the assessment process, but an introduction to the various types of technology used by people who are blind or visually impaired, and some suggestions on how to teach your child about using technology.

In the meantime, you might want to suggest to your child's teacher that they acquire the AT Assessment book mentioned above. (I know it's a shameless plug, but I promise I won't do it all the time, so come back every week or so to see what we're talking about next.)

Ike

Sharing Ideas and Questions About Cortical Visual Impairment

Hello, my name is Christine Roman. I am so honored that AFB and NAPVI asked me to contribute to the FamilyConnect site. It is my pleasure to have the opportunity to share ideas with those of you who have a special interest in cortical visual impairment. My experiences as a teacher of children with visual impairment led me into what has become a passion. In my 17 years as an itinerant vision teacher I had the occasion to work with students who had all types of visual impairment or blindness caused by pathology or injury to their eyes. But I was also lucky enough to be the vision itinerant who served a large residential center for students who had multiple disabilities. It was in this setting that my greatest challenge was born. The classroom special education teachers urged me to explain how I could refuse to work with students who had "normal" eye exams but who acted like they didn't see. In many cases, these cortically blind students seemed more affected than their classmates who did qualify for services because of their cataracts, glaucoma, or other ocular conditions. I did unofficially add them to my caseload but I didn't feel confident about my skills with this unique group of students.

My thoughts of these children who had such confusing vision issues never left me even after I left the public schools to work and study at The University of Pittsburgh. While at Pitt, I also became an O&M Specialist and attained a Master's in Dr. Verna Hart's program for medically fragile infants. I also began working in early intervention programs, at the Western Pennsylvania School for Blind Children, and as an infant developmentalist in the NICU and in NICU Follow-Up at The Western Pennsylvania Hospital. Each of these additional experiences led me to research in CVI that became my Ph.D. dissertation topic. After I left Pitt, I began a teacher-training program in vision at Marshall University Graduate College in West Virginia. Today, I am the Director of Pediatric View at West Penn Hospital and I am the CVI Project Leader at The American Printing House for the Blind. I also am honored to consult with schools, educators, and families.

I look forward to sharing stories about CVI-related topics you are interested in. These topics can include identification/diagnosis, assessment, educational programming, environmental supports, literacy, or service delivery. I am anxious to begin our discussions.

Making Decisions and Keeping Track

Hi again everyone!

I thought maybe this week I would discuss the issue of making literacy decisions throughout your child's educational life. I think that the people who visit this Family Connect website are at various levels in their journey. Some of you will have preschool children and will just be beginning to find information that you need. Others of you will be "seasoned experts" with older children and years under your belt. Still other families are here because their child may have experienced a decrease in visual acuity or ability recently, regardless of their age.

One important issue for parents is the decision about their child's reading media. Some people consider this a decision between two options: print OR braille. I'd like to challenge that assumption and give you another way of thinking about this decision. I'd like to give you some things to think about as you consider decisions related to your child's reading media:

1. As I mentioned in the previous post, I like to think of a child's "literacy toolbox" as big, open, and flexible. Our goal should be to fill the child's toolbox with as many tools as appropriate so that as your child grows, he or she will have many ways to gather information and can choose the best tool to use for the task. Have you ever heard the old saying "If all you have is a hammer, all you see are nails"? We want children to grow with many options for gathering and conveying information including possibly print, braille, large print, print accessed with the use of optical devices, auditory books, live readers, use of slate and stylus, use of computers...the list goes on and on!

2. I believe that the decision to focus on braille or print or a combination of braille and print in initial reading and writing instruction should be based on specific information about your child, not on a philosophical stance or attitudes. PRINT and BRAILLE are equal in value, anything that can be represented in print can be represented in braille; please remember that this is a decision that empowers your child! Looking at your child's unique characteristics is the best way to make good decisions.

3. I believe that your voice, your thoughts, your opinions are critical in this decision. There are creative, experienced professionals who can provide you with their thoughts and opinions based on their (often extensive) experience and these opinions can be incredibly valuable, but ultimately, you are the expert on your child. Sometimes the decision about reading media is complex and having several different perspectives can strengthen the decision-making process.

4. Please don't forget that decisions about the tools in your child's literacy toolbox should be revisited often (at least once a year) with two things in mind--how is your child progressing in the current medium and are there literacy tools that should be added to your child's toolbox?

So, those are my quick thoughts on this Thursday morning. Next week, let's talk about literacy INSTRUCTION! That will be fun!

Cay

Falling in Love with Braille

Hello everyone! Happy New Year! I'm Cay Holbrook. I am thrilled to be connecting with you this month and hope that we can have some very interesting discussions and learn from each other.

First I will tell you a little bit about myself. When I was an undergraduate student at Florida State University, I happened to know a fellow student who was in the program to prepare teachers of students with visual impairments. I went over to his house one Sunday afternoon and he was completing his braille homework and I started looking at the Perkins braillerwriter and his textbook. It was love at first sight! I was so intrigued with those six dots and I spent hours pouring over Louis Braille's ingenious code! In fact, my friend was very happy because he was able to go in the other room and watch a football game while I monopolized his braillewriter!

I became a teacher of students with visual impairments and worked directly with children (mostly elementary aged) in Florida, South Carolina and Georgia. Then, I realized that I had a passion for "spreading the word" to other people who were interested in teaching children with visual impairments and so, I went back to school and completed graduate work, eventually a Ph.D. Since that time, I have been preparing teachers in Baltimore, Maryland (at Johns Hopkins University), in Little Rock, Arkansas (at The University of Arkansas at Little Rock) and currently at The University of British Columbia in Vancouver, BC, Canada!

Without question, I would say that my most powerful memories in my work have been my connections with children and their families. I am so grateful when parents invite me to join them in their journey and I appreciate how much I learn from these families. I have been fortunate to have had many opportunities to step far away from the "ivory tower" of university life as teachers, parents and student generously include me in their lives.

I'd love to hear your stories!

I am interested in everything concerning children and youth with visual impairments! How is that for an open door for discussion? But, I am most interested in the development of literacy skills. This includes the development of reading and writing in print, braille, a combination of print and braille and other methods of accessing information in our world! During the next few weeks we will mainly focus on literacy, but I am happy to address other topics as well.

Editor's note: Dr. Holbrook is also the author and editor of many books and articles, which are available in the AFB bookstore.

Practicing Social Skills During the Holiday Season

Hello, and happy holidays to all. My name is Dr. Sharon Sacks. I have worked in the field of education for students with visual impairments for over thirty years as a teacher of students with visual impairments, a university professor in teacher preparation for students with visual impairments and students with multiple disabilities, a school administrator, and a researcher.

Because of my own personal experiences as a person with a visual impairment, I am passionate about working with children, their teachers, and families on the acquisition of socially competent behavior. This vital area of the Expanded Core Curriculum is the key to developing friendships with peers, learning to interact with adults and others in the community, improving self-advocacy skills to make appropriate decisions, and even getting and maintaining a job as a teen or young adult.

The holidays are a perfect time for families and friends to gather together. Children with visual impairments should be expected to be part of all of the excitement and fun of the holiday season. Providing your child with opportunities to experience all the sounds, smells, tactile, and visual images of the holidays allows your child to share memories with others.

For example, giving your child opportunities to cook and bake special recipes, shop for a special gift for a friend or relative, or attend a holiday movie or show helps students to feel capable and reach beyond themselves. Also, the holiday season allows children who are blind or with low vision to practice their manners at family meals, social greetings when visiting others, and expand their ability to engage in meaningful and age-appropriate conversations.

Finally, I believe strongly that being a socially competent person means giving to others who are less fortunate. Think about having your child purchase a canned good or a toy for another person. I hope as you listen and read my interview about social skills instruction, you will use many of the ideas and strategies with your child while enjoying the beauty and joy of these winter holidays.

What Toy to Buy for My Visually Impaired Kid?

Greetings to all. I am very pleased to introduce this month's expert who will write about a subject that I know is important to many families at this time of year. Emily Coleman is the mother of Eddie and is assisting us by sharing her expertise on the subject of play and toys.

With the holiday season upon us this topic is on the minds of many families. I invite you to not only read the blog but also to actively participate by adding what has worked for you. I would love to see examples of games that are accessible for children and teens. Ideas for homemade as well as purchased toys would be an excellent addition in these troubled economic times. If you would like us to post a picture of your favorite toy please e-mail it to us at familyconnect@afb.net.

The FamilyConnect web site has a wonderful resource in our Toy Guide as well as articles for families of infants and toddlers such as Choosing Toys and Creating a Play Area for Your Child and Teaching Your Baby to Play with Toys.

By Emily Coleman

Right before a birthday or the holidays, I wander through discount stores wondering what would be the perfect toy for my visually impaired son. Let me tell you, he is one kid that is hard to impress. Most toys keep his attention only long enough for him to throw them out of his way.

So, I keep my eyes open for toys he'd enjoy while I also try to pick the ones that serve a secret purpose. You may wonder how a toy could have a "secret purpose" but some of them do. The ones I look for are fun to play with and also meet educational or therapeutic goals, teach him what real-life objects are, or simply help him play with other kids.

Therapists and teachers love it when you buy a toy to meet one of their goals. When Eddie was an infant, or when he wasn't able to manipulate toys well, I purchased a lot of "cause and effect" toys. You know, you hit a button and it sings, or you shake it and it rattles, etc, etc. He loved those simple toys and quickly grasped the concept of "cause and effect."

Now he is a toddler and although he likes the easy toys, I have higher expectations. So, I buy toys that do multiple things and that also motivate him to activate them. For example, he has a shape sorter that also has beads that rattle when you shake it, and when you drop the shapes in, they make a funny noise. So, there is a motivator for him to fit a shape into the right hole, because the funny noise makes him laugh. He is then having fun, learning shapes, and working on fine motor skills.

Finding educational toys isn't too hard, but finding "real-life" objects that he likes to play with can be tricky. My son loves music and therefore most of his toys have a musical component. I wanted to get him a toy instrument of some kind last Christmas and I looked at the toy keyboards. Like most toys, they have that "dinky" electronic toy sound that drives us crazy. So, instead I looked at real keyboards at the discount store. He is three, so I'm not going to buy him an expensive keyboard from the music shop, but for twenty dollars I could get him a keyboard with a good range of keys, buttons that played different beats, and a tonal quality that wouldn't make me cringe every time he played with it.

Another simple example of a "real-life" object is a book. He gets braille books for every holiday and although he doesn't read yet, he is still learning what books are and that they are important. While shopping, any time I can substitute a "real" object for a toy, I get the real thing.

My final "secret purpose" for a toy is to help my son gain social skills. Basically, he needs to have some of the same toys that all little boys do to interact with peers. One thing most boys like to do is play with cars and trucks. Well, they don't make much noise and my son can't see them zooming across the floor so he could care less about them. Therefore, I seek out vehicles that do more than just "zoom." I've found him a bus that sings when pushed, a dump truck with all the right sounds, and a train that sings and toots its horn. Sure enough, we recently had a sighted child his age over and they pushed those vehicles back and forth across the floor and both kids enjoyed it.

Other good toys that draw kids to my son are balls that make any noise; like jingling, beeps, or funny "dog toy" noises. Again, they'll roll it back and forth and because of the noise, my son can go after it too when it rolls away.

I have one more piece of advice when wrapping those toys this holiday season. Be sure to take them out of the packaging before you wrap them! Isn't it better to have the final result of all that unwrapping be a toy and not a package? It can take me quite a while to get toys out of the packaging these days so I don't want him waiting while I find the essentials to access the toy(i.e. scissors, screwdriver, jackhammer).

Finally, even though these "toy goals" are great to use, it is also fun to buy something just because your child will like it even if that is the only purpose it serves; so don't be afraid to do that either. We'd love to hear from parents with toy suggestions for kids of all ages. Please post your favorite toy and where you can find it or your favorite place to shop. Also, if you made a creative toy for your child, we'd love to know how you did it. I'm always looking for new ideas so please share your great insights with the rest of us.

What Will Your Child Be When He or She Grows Up?

In recognition of National Disability Employment Awareness Month, I am pleased to offer up FamilyConnect's second "Ask the Experts" blog post, which focuses on career education. My name is Dr. Karen Wolffe, and I am the director of AFB CareerConnect®, a free online resource that connects young people to visually impaired mentors, and provides families with videos of blind people on the job, success stories, and more.

Career education is critical for preparing children from their infancy to transition from school and childhood dependency to work and adult life. I have joined some of my professional colleagues and recorded responses to a series of relevant questions and those audio interviews are available on FamilyConnect in the Education section. Specifically, I answered the following questions:

• What three things should parents know about career education?
• What can families do at home to support career education skills?
• What can professionals do to help parents reinforce career education skills?
• And, what are the benefits of a parent/professional collaboration on building career education skills?

I hope you will take a few minutes to listen to my audio interviews or read the transcripts of those interviews. I welcome any questions or comments you might have. The intent of this feature, the "Ask the Experts" blog, is to open up a dialogue between families and experts in fields of interest (if you read last month's blog post you know that parents are included as experts as well as professionals). These blogs are being archived on FamilyConnect so that you may access them for the foreseeable future.

Please let me know if you have any questions about how to encourage your visually impaired child to consider career opportunities...we'll all benefit from an open dialogue, but of course it's always the children who stand to gain the most from our working together on issues of importance. I will happily respond to any comments posted. Thank you for your participation.

Planning for the Financial Future of a Child with Multiple Disabilities

If you're worried that your child will not be capable of full employment due to cognitive or other limitations in addition to blindness, you are probably facing a dilemma. Most parents want to provide some kind of financial support for their child after they are gone—whether deceased or disabled themselves—since most government benefit programs such as Supplemental Security Income (SSI), Medicaid, Social Security, etc., are insufficient for providing the quality of life most parents want for their child. So they naturally think about leaving some funds to their child to offset the quality of life deficit that usually exists.

Unfortunately this is where most parents discover a dilemma: any funds above $2,000 left to a child will generally disqualify that child from receiving SSI and Medicaid benefits, the two primary benefits that support our multiply disabled children. So what is a parent to do?

There is a perfectly legal way to leave substantial funds for children with special needs while still maintaining eligibility for the various government benefits so critical to their welfare and quality of life. The now generally accepted way of doing this is to set up a legal device called a "special needs trust" (SNT) which not only allows continued eligibility for government benefits but also provides additional benefits such as added security for the funds, professional money management, and protection of the funds from creditors and lawsuits against the child.

Once such a trust has been established the parent or anyone else (grandparents, siblings, aunts, uncles, etc.) can now leave funds to the trust, which will then make payments for the benefit of the child. The person or company who manages the trust funds (known as the trustee) must have complete discretion to make payment decisions on behalf of the child.

So then, should all parents just establish a SNT for their child, which will then take care of everything? You might be thinking that it can't be that simple and if so, you would be right. There are actually 12 total steps that parents should take (including establishing the SNT).

Why Would We Want a Special Needs Trust for Our Child?

The following are some of the common planning issues and goals that many parents of children with multiple disabilities have:

• To provide for lifetime supervision and care since someone else will need to step into the role that most parents fill during their lifetime.
• To maintain all government benefits that provide for basic living expenses (SSI, social security) and coverage for medical care generally with Medicaid.
• To guarantee "supplemental" funds are available so that a meaningful quality of life is maintained.
• To provide for a long-term strategy to safely invest and manage whatever funds are left to the SNT for the life of your child.
• And finally, to avoid the family conflicts that can arise when other children and second families are often involved in the family dynamics.

Now we will look at each of the 12 steps that parents need to focus on to assure that they have comprehensively (through a Life Plan) examined all aspects of their child's future care needs before they can finally establish and then fund their child's SNT.

For those parents who simply want to get an idea of where they stand regarding their existing plans please take the time to review the Life Plan Checklist.

CAVEATS AND DISCLAIMERS:

The information provided here is not intended to be exhaustive on the subject of special needs planning. Entire books have been written on this subject so the objective here is more limited in scope. It is our intention to provide sufficient information so that parents have a general understanding of the main issues involved and then know what steps need to be taken to achieve their goals for their child by creating a Comprehensive Life Plan. Where legal terms and devices are discussed such as special needs trusts, wills, guardianship, etc., it should be understood that this is not intended as specific legal advice and accordingly, each family is always advised to obtain appropriate legal counsel when implementing these elements of a Comprehensive Life Plan for their child with special needs.