FamilyConnect®

For parents of children with visual impairments

Planning for the Future

A Trip to Work with Dad for Take Our Daughters and Sons to Work Day

Editorial Note: Today is the 20th annual Take Our Daughters & Sons to Work Day! Previously, we asked Joe Strechay to reflect on this opportunity for parents, guardians, and mentors to introduce our children who are blind or visually impaired to the world of work.

Today we are delighted to welcome CareerConnect® mentor Paul Kurtz as a guest blogger. Paul, a computer systems manager and analyst who is blind, took his son to work so he could experience office life for a day. The experience helped his son figure out what he did and didn't want in his own career.

How are you talking to your children about what they want to be when they grow up? Will you be taking your daughter or son to work today? We would love to hear about your current or past experiences in the comments, and we always welcome guest bloggers. If you are interested in writing for the FamilyConnect blog, please write to familyconnect@afb.net.

When my son was in high school he loved computers and decided that he would work in this field someday. So one day I took him to work for a career education experience since I was working as a Computer Systems Manager and Analyst. After a day in the office with me he'd decided computers might not be in his future because he realized he didn't want to work in a cubicle for 20 or 30 years.

That work day experience was good for him and kept him from going into a field he would not have been happy with. After earning a degree in advertising from the University of Florida, it turns out that he does do some computer work, but as part of a bigger career in home renovations. That day in the office with me helped him to see he would be happier working with his hands than sitting in a cubicle. Not only does he renovate homes, he enjoys being a handy man, tree cutter, and more. He'll cut your tree, install your computer, wire up your routers and switches, and build shelves for you to put your gear on. He's very good at what he does and is able to stay busy.

He has built some wonderful braille book shelves for my music books and built shelves around our front fireplace that look like they were there from the beginning. And yet, in the same breath, he's one of the very best at working with computers. He's good with blind people and understands the software even though he thinks it should do more.

By going to work with me that day, my son found what he did not want to do, which helped in the process of learning what he did want to do with himself. I try not to brag on him too much, but it's hard not to when he is this good at his job. He's put his 34+ years to good use!

Paul Kurtz
Proud Father

Bring Your Son or Daughter to Work Day: "Suit Up, Head Out, and Get Your Work On!"

Editorial Note: in honor of the upcoming 20th annual Take Our Daughters & Sons to Work Day on April 25, 2013, we asked Joe Strechay to reflect on this opportunity for parents, guardians, and mentors to introduce our children who are blind or visually impaired to the world of work.

Some of my earliest memories involve my father bringing me, my twin brother, and on occasion our older brother to his office on a Saturday — okay, it wasn't the official day. I know we had many similar visits to my mother's workplaces over the years. These experiences live in my memory to this day. I am Joe Strechay, a professional, a person who is blind/visually impaired, and the American Foundation for the Blind's CareerConnect Program Manager.

I know my brothers and I still speak of the adventures and experiences we had traveling into New York City early in the morning via car or bus, as two rambunctious young twin boys with their older brother.

It was all so exciting to us. We traveled into the city, arriving near his office building at 42nd Street & Lexington. The routine usually involved a stop at the coffee shop below the building to get breakfast to bring up to the office.

Then we would travel into the building, check in, and then ride up the elevator to what I remember as the fortieth floor of the building. As we exited the elevator and entered his area of the office, we would find a span of desks, and sometimes meet someone who worked with or for our father at the company. Typically, there were very few people there on a Saturday, but on occasion we would meet someone working at their computer. Our father would offer us a preliminary tour of the office, especially where the restrooms and such were located. Our father's office was the home base for us, and we would spend the day with him.

Even if we didn't totally understand what he did, I would say we had a general idea. He was reviewing facts, figures, and accounts. He oversaw the accounting for the company. I know he was quite patient with us, and we were a handful during these adventures. Our father worked a lot of hours, but this truly provided a glimpse into what work was for him. We all felt this was the expectation for us later in life. We would work in an office somewhere, and hopefully New York City.

We learned about the telephone system, computers, typewriters, the water cooler, lunch break, desks, offices, swivel chairs, and most importantly the supply closet — all of the cool pens, highlighters, paper clips, Post-It Notes, and rubber bands were located in there! We learned that the more important that your job was at the company, the bigger your office got. A few years later, we saw our father's office grow, and he got a mini-fridge in it — how cool was that? Also, the view from the window changed as he moved up in the organization.

I also may have memories of my brothers and I having rolling chair races through the empty hallways, we may have gotten into trouble a few times — just a few. It was so neat for us to experience what our father's day was like, even if on a weekend. Now, it wouldn't have been the same during the week. It would have been quite a bit busier and more crowded.

My brothers and I also spent time at our mother's office growing up; during that time she worked in real estate. We experienced the different aspects of her job, ranging from answering calls from buyers and sellers to preparing houses for a "showing." We learned a lot about what is expected in work from our parents and visiting their job sites.

What I Learned

• about the structure of a work day and how it varies by job
• that work could involve early mornings and late evenings
• that you don't want to bother the coworkers — "Sorry, Dad!"
• that the photo copier was not for making massive amounts of copies of our stuffed animals
• that you have to respect people's food in the shared fridge
• about the rapport between bosses and employees — they let the boss's kids get away with some stuff, just saying...
• that you are not supposed to go through people's desks
• a ton of concept development, such as concepts about elevators, stairwells, and accounting
• that there are times you have to be really quiet
• that you sometimes have to work when others are not
• that the work day varies by job and organization
• that jobs vary in the types of duties and tasks

I think that "Take Our Daughters or Sons to Work Day" is great, but there are many opportunities to do it. It may not be open at every workplace, and I don't think it should be a routine because you may end up causing issues at the workplace. Although a workplace is a great place to visit, it is not a daycare — unless you work at a daycare, and they may still frown on it, too. I think children need to be aware of the expectation of work — they should expect that they will work! There are opportunities to point out jobs and tasks throughout everyday life. Make it the norm. Have your children ask about different jobs (though maybe not when there is a huge line at the grocery store and the guy behind you is groaning in frustration).

AFB CareerConnect offers an opportunity for kids and adults to explore careers and read stories about adults who are blind or visually impaired and their jobs. These stories are part of the "Our Stories" section of CareerConnect, success stories about CareerConnect mentors and other people who are blind or visually impaired. You and your children can explore careers every day with the ease of surfing the Internet. But, there is no substitute for experiencing it firsthand.

So I strongly suggest that you find out if your workplace allows you to bring your son or daughter to work, and take advantage of the bonding experience and life lessons — you never know, he or she may be introduced to their future career through you or your coworkers.

I know throughout our childhood, my brothers and I were provided different tasks to complete that related to my parents' jobs, such as stuffing mass amounts of envelopes, distributing fliers in a neighborhood, helping prepare a house, and so on. I am not talking about breaking child labor laws or enlisting your kid in a sweat shop, but finding small tasks that they can help with on occasion. I know we felt good about completing them and helping our parents. Not always—maybe "He-Man" (1980s cartoon) was on—but we got over it. I barely remember those cartoons, but the experiences with my parents' work live on vividly. It's time to make work the expectation, and be open about it.

Summer Is the Perfect Time to Think About Career Goals

What Did You Want to Be as a Kid?

I am Joe Strechay and I work at the American Foundation for the Blind in the AFB CareerConnect program. I write about career exploration, employment, and transition for the most part. On occasion I get the opportunity to write about current issues, entertainment, or technology.

I think back to the days when I was a child or even teenager. I wanted to work on the business side of professional sports — preferably the National Football League. I did come out of my undergraduate degree working in sports-related public relations and marketing. I enjoyed that, but I came to the conclusion that I was more interested in education. Truthfully, that was a debate for me during my undergraduate years. Our career goals change over time and through experience.

What is a realistic career goal? It is a goal that is achievable, and congruent with the educational path that an individual is taking. A career goal isn't always defined by a person's interest, but a person is more likely to be satisfied by a career that relates to an interest. "Relates" is a key word for this because not everyone can get that dream job to start. It is important to realize that within a field there are many different types of jobs. You can look at the AFB CareerConnect Career Cluster for law and you will see exactly what I am explaining.

When I hear someone wants to work in a specific field, I start to think about what it is that interests them. What skills and abilities do they have? What would they value about a job or a place of employment?

These are not simple questions. It takes years of career exploration and even trial and error through experiences to answer them. The road to becoming more self-aware can be a bumpy one; not all teens or persons are willing to open their eyes to reality. We are not all going to be famous actors, singers, or professional athletes — am I talking crazy here? I am not Simon Cowell, formerly of "American Idol." I am a guy who believes we all need to explore.

Career planning is a lifetime journey. I am still planning my career. I set a career goal for a few years down the line, and then I create objectives that will allow me to reach that goal. I was just telling my wife that towards the end of my graduate work, I set a goal that I wanted to work at AFB within CareerConnect. I set that goal seven years ago. I have been working within CareerConnect for a little over three years.

I still have career goals and objectives that I am attempting to achieve. How many of your children have mentors? I still have mentors, and they change as my career goals change. Mentors are great for helping you research and find out how you can reach a goal. I have mentors for different aspects of my life even. AFB CareerConnect can help connect your children or teens with mentors who are blind or visually impaired and working in their fields of interest.

Take the time as the summer begins to help your children explore careers through real life experiences. Introduce them to the jobs that are around them when you go to a store, office, hotel, mechanic, and more. Schedule some visits to local places that may host jobs related to their interests.

Get them thinking about all that it takes to be employed by encouraging them to use the Job Seeker's Toolkit on AFB CareerConnect. The Job Seeker's Tookit is a free, self-paced, online, employment process course aimed at teens and adults who are blind or visually impaired. The course covers self-awareness, career exploration tools and resources, pre-interview skills and tools, and the interview and followup.

One great thing about this course is that you can register as a user and then choose to generate a teacher code. Your child can enter this in their profile and associate you as the teacher. Being an associated teacher just means you can check your child's progress, and your child can send you copies of her assignments via e-mail with a check of a box. Check it out!

Some ideas for the summer months:

• Talk to your child about career goals
• Explore careers on AFB CareerConnect
• Point out jobs in the natural environment
• Schedule visits to different locations with jobs of interest
• Encourage the importance of mentors
• Get your child using the Job Seeker's Toolkit

What are your child's career goals? What objectives do you think will help him reach those goals?

Are You Aware?

As October draws to a close, I wanted to take a moment to commemorate this month's importance as National Disability Employment Awareness Month and to ask you, as parents, caregivers, teachers, and friends of children who are visually impaired, to get your youngsters thinking about and aware of career options as soon as possible.

In 1945, Congress designated the first week of October as National Employ the Physically Handicapped week, which was an effort to educate the public about hiring people with disabilities. In 1962, the word “physically” was dropped from the title to include people with all disabilities. In 1988, Congress made the decision to expand the week to a month and renamed it “National Disability Employment Awareness Month.” This meant the entire month of October was dedicated to expanding awareness and employment opportunities for all people with disabilities.

Every parent wants his or her child to grow up and find fulfilling employment. It is important for parents and families to work as a team with their child's teachers and school administrators. This includes advocating, educating, motivating, and encouraging. Don't sit on the sidelines because this is the most important game you and your child will play in. It may be up to you to get your child thinking about employment and the skills necessary to be successful on the job. I believe children should learn and think about employment options from birth. We should talk with them about employment options and the skills that are necessary for careers, and we should explore the path that leads to that career.

I work in the AFB CareerConnect Program and my job is all about creating content that will help teens and adults who are blind or visually impaired explore and think about careers. I also get to work with parents, families, and professionals. I have worked in education from grades K-12, as well as in rehabilitation or habilitation with clients 18 to 80 years old.

I have met with teenagers from all over the country, and I keep hearing unrealistic career goals from high school students. While it would be nice to live in a world where anything is possible, it simply is not the case. All individuals need to have realistic career goals. Your educational path and skill set have to sync with what is required for a particular career. If not, this differential will lead to disaster.

AFB CareerConnect has a new, self-paced online employment training course called the "Job Seeker's Toolkit." This innovation allows users, who could be teens or young adults, to navigate through four modules aimed specifically at preparation for employment. There are short, easy-to-read lessons that connect to assignments with examples. The assignments are useful tools that can be saved in a user's AFB CareerConnect Portfolio. These tools can be printed out as well. The neat thing is that a parent or teacher can sign up and their account will be linked with their child or student. The parent or professional can generate a code and a student can add that to their profile. Then, when the student submits his or her assignment, the student can check off that they want the parent or professional to receive the assignment as well.

The Job Seeker's Toolkit could be an amazing resource for you and your child. It has advice and tips that guide users through the employment process from becoming more self aware to starting on the job. This is a FREE resource that is worth checking out. The course also has an associated message board that allows users to ask questions, share advice and tips, and more.

Nothing beats real-world experience, so get your children prepared and out there, exploring all types of jobs and careers. Utilize AFB CareerConnect and the Job Seeker's Toolkit. Encourage your children or students to use their skills and get some experience as early as possible. How many of you had part-time jobs while in high school? Don't you believe that your children should have those same experiences?

Some resources to check out:

• The AFB Press CareerConnect book combination.
• 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.
• AccessWorld has a few articles specific to employment that would be great to check out. There are two in the October 2010 issue. But, you should also check out the July 2010 "Back to School" issue. AccessWorld always offers great evaluations of today's technology with respect to persons who are blind and visually impaired. Check it out today!

What is the Expanded Core Curriculum?

Are you familiar with the term "Expanded Core Curriculum" (ECC) or know what it means? It refers to the non-academic subject areas that students who are blind need to learn in order to become independent and successful:

• Social Interaction Skills
• Orientation and Mobility Skills
• Independent Living Skills
• Recreation and Leisure Skills
• Assistive Technology
• Sensory Efficiency
• Career Education
• Self-Determination
• Compensatory Skills

The special education law IDEA in the United States does not require all of these ECC subjects to be taught along with the traditional academic curriculum. Although academics are important, these skills are what make a person successful in life. Learning social skills will help your child interact in with his or her peers at school and in the neighborhood or in the workplace. And it is exciting and fun for families when children participate in sports and recreation, or learn how to cook their own meals and join in with doing household chores.

The concept of ECC was written and developed by Phil Hatlen, one of the greatest leaders in the blindness education field and since then the entire blindness field has agreed on how important these skills are for blind students to master in order to lead productive lives. So much so that the American Foundation for the Blind (AFB) and Perkins School for the Blind have launched a new website forum, www.ECCadvocacy.org and national advocacy effort to promote the inclusion of ECC into the next re-authorization of IDEA.

As parents you may or may not have heard of this concept, and you need to know so that you can advocate for educational resources for your child. As parents we can become a positive resource for the schools. It's important for you to know that your child can have an active and productive life.

Further information about ECC can be found here on FamilyConnect.org and the AFB and Perkins School for the Blind websites.

My Very First Paid Internship

Hi! I hope you are all having a good summer. I am very pleased to introduce this month's expert, who will write about a subject that is important for families: summer jobs and internships. Daniel is sixteen years old, and interned in the AFB web department this summer.

With the summer winding down, maybe some of you (or your teenagers) have thoughts on how your child's summer job experience went. We would love to hear your stories, whether as comments below, or as blog entries of your own. If you have an experience to recount, please e-mail us at familyconnect@afb.net or reply below!

FamilyConnect's "Transition to Independence" section for Teenagers has some great resources on summer programs, and heading to work. And if you live in an area where you're not likely to run into a professional who is visually impaired on the street, then explore the online resources of AFB CareerConnect®, where your child can explore career possibilities further, read success stories, and find a mentor who is visually impaired.

Also, be sure to check out Aaron's Adventures in Employment, a humorous series of video and audio dramas about a teenager dealing with putting together a resume, getting through the interview process, and learning how to succeed on the job.

My name is Daniel Gillen, and I am a sixteen-year-old rising high school junior. I have been totally blind since birth, and I have managed to advance into the workforce after completing one half of high school. I live in New York City, and I attend The Beacon School on Manhattan's Upper West Side.

Since the end of elementary school when I left an all-visually-impaired class, I have had a steadily growing interest in technology, math, science, and engineering. These interests spurred from my mastery of screen readers, braille note-takers, and other adaptive technology products which enable me to maintain above-average grades in all classes.

Back in grade school when I was wondering how a sighted teacher would set up my document pages on a computer in typing class, I was thinking of how I would ever be able to take total control over the computer without sighted intervention; that only came during the summer of 5th-grade graduation when I was shown basic JAWS commands, after which I taught myself the vast remainder. This ultimately led to my first paid internship; I am working in the AFB web department, so I make use of JAWS on my office computer for virtually all tasks. I put together spreadsheets with updates to the AFB Product Database, as well as some of the most visited pages on AFB's website.

My current internship working for the AFB is overseen by VISIONS, an organization with a similar mission which has been placing high school and college interns all over New York City. This past March, Lighthouse International, where I had gone to preschool and where I have been taking music lessons for ten years, held a job application fair. Unfortunately, I received the braille form after the application deadline.

However, in June, my father, while coming home from work, met Crista Earl, Director of Web Operations at AFB, on the street. He first described her to me as a woman with a guide dog. He and Crista had conversed for a long time about my interests in technology, and after finding out her title, my father asked me to e-mail her about possible interview times. The interview followed soon after my 10th-grade year ended, and the first orientation followed that. By July 7, I was physically oriented to my workplace, and I had begun my first work.

AFB was not new at this point in time to my family or myself. In 2008, my guidance counselor had informed me about a summer workshop in Provence, France with AFB and L'Occitane. The program was called Provence dans tous les Sens ("Provence in Every Sense"). Luckily, this was the last year of this once-in-a-lifetime experience. When applying, I was originally not selected. However, one person dropped out, so I was called for a runner-up interview four days prior to being accepted. My mother and I will never forget the experiences we had on the trip. Though farther from home than ever before, it provided a wealth of knowledge that inspired in part our current way of life.

Here is one final note on jobs and internships. This past year, I performed 50 hours of community service at the Jewish Guild for the Blind. This gave me the opportunity to do multiple tutoring activities, including preparing non-English-native-speaking adult students for GED testing, as well as helping them with ESL classes. I saw community service of any kind as a time to share with others the knowledge which I have been fortunate enough to gain. Whether a paid internship, community service, or volunteering, any job may be considered fulfilling if it is enjoyable by the employee. Jobs such as mine are meant just as much to fill spare time during the summer as they are to earn money.

Developing Next Year's Individualized Educational Program (IEP)

Spring is a time for both renewal and obligations—with flowers blooming, taxes due, and for many families, the development of next year's Individualized Educational Program (also referred to as an Individualized Education Plan, or IEP) for their child.

The IEP meetings can be a time of rising anxiety and many questions. It may be that you have developed a good working relationship with your service providers and attend the meeting with confidence. For some it becomes like a family reunion where you catch up on recent events with the people who have been working with your child through many years and transitions.

However, there are frequently questions and concerns that involve the scope and timing of services. Is my child receiving instruction in all the areas he needs and is sufficient time allotted? Do I need to push for more instructional time? Are all the necessary skills being addressed? In short, how do I know if this is really a good deal?

FamilyConnect provides you with many resources where you can research a wide variety of topics including information about IEPs and skills in general. There are a variety of articles that you can read developed both by age and topic. Listen to parents and their children talk about their experiences, in a new series of interviews.

Are you still in doubt? Reach out to the thousands of families who are registered users of FamilyConnect by using one of the many message boards available to you. Get your advice from the experts who have paved the way before you or are living it now. You may want to see if there is a NAPVI chapter in your state or region. You can do so by browsing the directory of services or calling them directly at 800-562-6265. No NAPVI chapter? Then start one today. NAPVI will help you through the process.

I would love to hear from you on this topic. How do you view the annual IEP? Do you have anything you would like to share on this blog? It can all start right here.

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 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.