Purple Day for Epilepsy

Purple and Green Earth Reads "Supporting Epilepsy Around the World." Text to the side in purple reads "On March 26 wear PURPLE to support awareness of epilepsy worldwide. Visit www.purpleday.org

The following blog is by Erin Seiler, a youth leader with NCWD/Youth’s Youth Action Council on Transition (YouthACT) Team Seize Control. YouthACT is a national project for youth ages 12-25 geared toward getting more youth with disabilities involved as leaders in their communities. Team Seize Control’s supporting organization is the Epilepsy Foundation Eastern Pennsylvania (EFEPA)

There are many ways to explain Epilepsy. It’s a seizure disorder, a misfiring of the nerves, a thunderstorm inside your head. However, very few people actually look to see what’s behind the definition. Very few people dare to dig deeper than that four- or five-word sentence because behind that veil, lies more than 65 million faces and within each and every one of those faces lies a story of someone who struggles with Epilepsy. As one of those faces behind the veil, I would like to tell my story so that maybe, just maybe, one day that veil will be lifted for the whole world to see.

On a rainy afternoon, in the summer of 2002, a herd of six-year-olds surrounded an old television set in Goddard Day Care. Walking into the small room, one of the counselors turned off the lights as I sat down next to my friend, Rachel. This is the last thing I remember before waking up in a room of white walls on a hospital bed. My mom and dad were sitting in two small black chairs beside me. Overwhelmingly confused, I wanted to ask what had happened. Unfortunately, a tall man in a doctor’s lab coat entered the room before I ever got the chance. He asked my parents if he could talk to them privately in the hallway. As they walked away, I attempted to make out what they were saying, but it was no use. Peeking out from the corner of the latex scented wall, I watched my parents’ faces as the hope and curiosity slowly melted away. Sadness, confusion, nervousness, and dismay took its place.  This was a face I would become all too used to seeing. Later on, I would learn that I had had a seizure.

Purple ballons over a purple tinted beach with the word Aware on a bannerA seizure is much like an unexpected thunderstorm in the brain. Electrical signals are constantly firing throughout the brain in order to tell your body what to do. A seizure occurs when there is a misfiring or multiple misfirings of those signals within the brain. When people think of seizures, they often imagine someone on the floor with limbs flailing everywhere. This is called a tonic-clonic seizure, or more commonly known as a Grand mal. However, this is only one type of seizure. There are up to 40 different types of seizures that exist. A seizure can be different for each person. Losing consciousness happens often, but not all the time. A person can be somewhat aware or conscious while experiencing a seizure.  This can vary depending on the type of seizure someone is experiencing. In the United States, 1 in 10 people will have a seizure in their lifetime.

After a year had past, thoughts of that seizure had all but faded into oblivion. That is, until one morning, right before school. Thick purple covers engulfed me as I laid sound asleep. All of a sudden, I heard my mom’s voice frantically yelling out my name like a distress signal. Utterly confused, I woke up to ask her what was happening. It was as if I had given her a heart attack just from being in a deep sleep. When she called an ambulance, I thought she was being ridiculous! “I just overslept. I’m sorry!” I said. I quickly realized there was no changing her mind no matter what I said. Strapped to a gurney, they rushed me to the hospital, where I was diagnosed with Epilepsy.  What, from my memory, seemed like waking up from a deep sleep, was actually waking up from a tonic-clonic seizure.

Although I started having seizures much more frequently, I never quite got used to the intense look of fear in my parents’ eyes. I remember one night around midnight when my parents were leaning against my bed as if there was some kind of psychoanalysis going on that I didn’t know about. I was confused and it took me a moment to remember who they were, but I felt fine. Then, they asked me what my name was and for some reason it just wasn’t coming to me. I was starting to panic. They asked me my name and I couldn’t remember. My parents were screaming with worry “What is your name?!” and for the life of me, I couldn’t remember who I was.

What I was experiencing here was something called the postictal state. The postictal state is the altered state of consciousness someone experiences after they’ve had a seizure. The symptoms during postictal state vary heavily between each person. Sometimes there is a loss of a voice or a stroke-like mumbling. There could be feverish symptoms or vomiting. It could even be as simple as dizziness and exhaustion.

As the years went by, I was put on numerous medications and countless different doses, sometimes changing every week. I like to laugh at the fact that I can remember the side effects better than the names of the medications. Most kids are anxious to turn 16 or 18. I was excited to turn 12 and 15 because those are the ages my doctor told me I might grow out of Epilepsy.

There is currently no cure for Epilepsy. There are, however, medications that can attempt to keep seizures under control. If the first two medications are not successful, there is a decreased chance of that person’s seizures being controlled. Unfortunately, this is the case for much of the population. In fact, one-third of people with Epilepsy are drug-resistant to all treatments. Some kids grow out of Epilepsy, but, for the most part, it is lifelong.

When I was in junior high, to be honest, I didn’t really remember much. The one thing that does strike my memory, however, is a constant flow of teachers telling me to stop daydreaming. I would always get confused by that term because I never remembered having a dream. Figuring that the teacher was right, I just brushed it aside and attempted to get more sleep. However, as the months went by, the “daydreams” started to happen more frequently. I was starting to fall behind in school when a regular EEG appointment answered my questions. I was having a new kind of seizure called absence.

Absence seizures are lapses in consciousness that often occur with staring. Because they begin and end rather abruptly, they can go undetected for months. They are often mistaken for daydreaming. After an absence seizure, a person will most likely continue what they were doing before.

Purple background with white lettering reading "Everyone Wear Purple"Very few people contemplate the topic of discrimination related to disability. I will never forget the first time my dad told my friends’ parents I had Epilepsy. Their faces were completely frozen. Gradually, as word spread around, I was getting invited to less and less parties and sleepovers.

People are afraid of what they don’t know or rather what they think they know. There is an endless list of myths about Epilepsy. Some common myths are that Epilepsy is contagious or people swallow their tongues while seizing.  Epilepsy is the 4th most common neurological disorder and yet, somehow, I believe it is one of the most feared and unknown. It can affect any age, race, gender, or economic status. 150,000 people are diagnosed with Epilepsy each year. Sixty percent of Epilepsy cases have no known cause.

Erin and a group of friends all wearing purpleSo, here I am, six years later, a sophomore in college, writing a piece about a disability called Epilepsy that is hidden behind a veil of ignorance and fear. More than 65 million people worldwide live with this incurable and often misunderstood disability. Through education and awareness, this veil can be eliminated. On March 26th, the world will celebrate Purple Day, a worldwide awareness day for Epilepsy. So, show your support, spread the word, wear purple, and upload a picture using this hashtag #epilepsyawareness.

Related Resources: 

Also take a look at the YouthACT co-written publications:

Learn more about YouthACT  and check out some of other blogs written by current YouthACT participants and alumni:


Posted in Accommodations, Advocacy, Disclosure, Education, Guideposts for Success, Health, Inclusion, Self Advocacy, Self Determination, Youth Development, Youth Leadership | Comments Off on Purple Day for Epilepsy

Health Care and Community College: An Often Overlooked Need


The following blog post is by Kathryn Nichols, an intern with the National Collaborative on Workforce and Disability for Youth (NCWD/Youth) at the Institute for Educational Leadership (IEL).

While they may not realize it, the structure of high school provides students with access to physical health services. There is a school nurse who is available if students are starting to not feel well. Students are required to turn in immunization records which encourages regular health maintenance at least at its minimum levels. Teachers see students every day which gives them the opportunity to take notice when something seems a little out of the ordinary for one of their students and then check in with them to make sure they are feeling well.

When transitioning to college, students are often responsible for their own health care for the first time. Many times students are not prepared to transition to health care independence successfully. While it is well-known that community colleges often need to provide extra academic supports to their students in order assist them in successfully transitioning, community colleges also enroll young people who are more likely to be uninsured and the supports that they need are often overlooked. Health concerns among students can add more stress to what may already be a stressful situation as they are transitioning to independence at adulthood. A student may not know where to go to get care and how she will pay for it if she does go somewhere. 69% of students who dropped out of college before completing their program said that health insurance would have helped them “a lot” to be able to complete. If a health issue or illness causes a student to miss class multiple times, it may be very hard for him or her to catch up on coursework. A student who is sick, in pain, or who is in a constant state of worry over how he will pay for his next prescription cannot be expected to be able to focus on coursework and succeed. This student may decide that he needs to work more in order to pay medical bills or to drop out of college in order to cut back on expenses.

Not all community colleges have the resources to provide their students with a student health insurance plan and a student health clinic, but colleges can connect students to the resources that are available to them and the organizations that can help them. Some community colleges have partnered with organizations such as Enroll America in order to not only make information on health care enrollment available but also to hold events for the college and the surrounding community to become informed and get assistance in enrolling. Coastline Community College in California has partnered with a local health care agency to provide primary and urgent care to its students. Students pay a health fee at enrollment and then are provided with access to a wide range of services through Memorial Prompt Care. By providing information to their students and making these connections, colleges can help to ensure that their students’ health needs are being met and that students are not leaving college due to health concerns that could have been addressed and treated.

Related Resources:


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Point, Process, Product: Developing Resources with Youth

Headshot: Jennifer Thomas

By Jennifer Thomas, Youth Development Specialist at the Institute for Educational Leadership’s Center for Workforce Development

The National Collaborative on Workforce and Disability for Youth’s (NCWD/Youth) Youth Action Council on Transition (YouthACT) recently published By Youth, For Youth: Employment, YouthACT’s third resource designed to aid youth in transition. It was important to NCWD/Youth that the youth and their adult partners on the council worked in partnership while also ensuring youth voice was at the forefront. In order to complete the brief with these important values in mind, we had to consider supports the youth might need and assist all YouthACT participants in identifying clear steps and strategies when working together. Clarifying the purpose, identifying the process, and discussing the product were key elements in pulling off the completion of the By Youth, For Youth: Employment InfoBrief.


It was important that YouthACT participants knew the purpose of the brief. NCWD/Youth informed the council that we needed their help in developing resources for youth when making decisions about their transitions to adulthood. We also made sure they were aware we wanted to create a document for all youth, including youth with disabilities and other disconnected youth (youth in the juvenile justice system, foster care system, out-of-school youth, etc.). We asked the teams to help us come up with documents that they would want to share with other youth and to be willing to share this brief with their peer networks. Having a clear purpose also helped the youth and adults reflect on their own experiences, enabling them to share their perspectives more openly. This helped individuals think about the supports they would need and staff think about how to create a safe space, especially for the youth.



In order to begin developing By Youth, For Youth: Employment, it was important to help YouthACT figure out a topic to cover, so we had brainstorming sessions via teleconference. The youth and adults were encouraged to freely list the topics. Then, we helped YouthACT narrow down the possibilities. Afterwards, we worked with YouthACT to develop an outline to identify the main points to cover. It was important that we mention creative jobs for one youth and finding your dream job for another. Next, we asked individuals to select parts to write, encouraging them to work in pairs or in groups if they preferred. Additionally, we took this time to make them aware that the document they were creating would be edited and may not look exactly the same once finalized. We helped the council set due dates for their parts. During the point in the process where council members were writing, reminders were sent regularly and some youth were provided assistance fleshing out their thoughts. Council members were then given the opportunity to review the final document and suggest any edits.



We followed up with YouthACT to get their input on the design of the brief. “How do you want the information arranged?” and “Should this brief be a tool youth can actually use or write/type in?” were among the many questions asked. “There should be pictures of youth working different jobs,” was one response. Participants wanted youth using the brief to have additional resources and to be able to note when they completed important steps. They also felt very strongly that youth’s experiences should be incorporated. As a result, in each section, there are tips and information, a checklist, URLs to additional resources, and a quote from a youth involved in YouthACT. There are also pictures of youth in various employment settings.

If you are going to incorporate youth-adult partnership and/or true youth voice when developing resources, know that it may take more work, but it is so worth it! Clarifying the purpose, identifying the process, and discussing what the product should be will definitely encourage youth to engage in resource development. Supports may be needed and parameters (i.e., expectations of all involved) need to be introduced as soon as possible. Discussions among the group are also really helpful. So go ahead: create a safe space and get your hands dirty creating resources with youth!

Check out the final product: By Youth, For Youth: Employment and take a look at the other YouthACT co-written publications: Guiding Your Success and Hitting The Open Road After High School: How to Choose Your Own Adventure to Success!

Learn more about YouthACT and check out some of other blogs written by current YouthACT participants and alumni:

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National Mentoring Month 2016 – In Real Life  

Headshot: Elijah Fagan-SolisBy Elijah Fagan-Solis, RAMP Program Coordinator in Albany, NY

In celebration of National Mentoring Month 2016, YOUTH POWER’s Ready to Achieve Mentoring Program (RAMP) site in Albany, NY wanted to share a personal, ‘in real life’ story that shows the power of mentoring in youth’s lives. The story highlights interview questions asked separately by Mentoring Coordinator Elijah Fagan Solis, with mentor Christina Narkon and mentee Alexander Hamm on their mentoring relationship. Christina, who recently moved out of the area, is a young professional who formerly worked with the New York State Senate Republican Campaign Committee. Her mentee, Alexander, is now a senior attending night school within the Albany City School District. RAMP is a program of the Institute for Educational Leadership based on NCWD/Youth foundational materials like the Guideposts for Success and Paving the Way to Work: A Guide to Career-Focused Mentoring for Youth with Disabilities

How did you both get involved in RAMP?

AH – Daphnne (Brown, Families Together in New York State’s Director of Family Involvement and Outreach) introduced me to RAMP when I was 13 years old. She gave me the opportunity to get extra work done for school.

CN – I got involved in RAMP during my undergraduate career. I had been working in an elementary school and I was helping to run a youth ministry program, so a friend (who was a mentor at the time) suggested I look into RAMP!


Alexander, with RAMP being career-focused, what career are you interested in?

AH – I’m interested in going to a law school and focus on criminal law. I also have thought about being a veterinarian.

Alex and Christina smiling with Marine Corps Devil Dog Mascot. "In real life" written across the bottom of the photo in gray. Do you two remember the first time you met?

AH – I remember when I first met Christina she was really big on teaching me manners.

CN – I will never forget the first time I met Alexander! I was brand new to the program, and as soon as I walked in he briefly paused from chatting with everyone to point at me and declare that I would be his mentor.


How has your relationship changed since that first day?

AH – Since we first met, our relationship has grown to be stronger. I feel as if I could ask Christina for advice if I need it.

CN – My relationship with Alexander has surely grown over the past few years. We first bonded over his search for a job. We built his resume together and I went with him to apply at various establishments. Now, I visit him at his place (or places!) of work. We discuss more in-depth issues now, as well. Just last month, I showed Alexander how to register to vote and we discussed politics, our civic duties, and various things that showed up on the Albany City ballot this past November. It is so interesting watching Alex grow from a student at Albany High to an adult who has intelligent and informed opinions about his community and how it can be better run.


What do you talk about or do when you are together?

AH – When we are together we talk about how I can better myself and better ways for me to budget my money. Last time we were together we talked about Republicans and Democrats and voting; I am now a registered voter.

CN – We talk about tons of things! We discuss everything from current events, to social media etiquette, to Alexander’s short-term and long-term goals in regards to his education, career, finances, and more


What goals have you been able to accomplish together as mentor and mentee?

AH – One goal me and her have worked on together would be treating people with respect and having manners. She told me being rude wouldn’t get me far with job opportunities and other things in life. With school, she told me I could argue with as many teachers as I want but it’s not going to change the fact that I have to graduate at the end of the year. Christina also helped me with dressing for an interview, and even brought me to places so I could apply for jobs. Her tips with interview clothing and manners helped me to get the job I have today.

CN – The first thing Alexander told me (and he told me over and over) was that he wanted- no, NEEDED- a job. Within a few weeks of meeting, we built his resume and started searching for jobs for him. He has since held a variety of jobs including managerial positions!


Do you approach life and school differently since Christina has been your mentor?

AH – Yes! It all falls back on the arguing with people, like a boss at work or teacher at school. No matter how I feel about them, I still need to do what I need to do and I can’t let anyone bring me down. Also, because of Christina, I now take notes at school and go home and study them, which I never did before.


Christina, how has mentoring Alexander changed your life? Has he taught you anything?

CN – Had I never been Alexander’s mentor, I would surely be a different person. He has taught me so much about how I approach life. I have never known Alexander to be pessimistic; he is a go-getter, and brings humor and an energetic dynamic to every situation. I try to hold this same approach now.


Tell us about one of your favorite memories together.

AH – One of my favorite memories is doing the Coca-Cola and Mentos experiment with her. I thought it was funny trying to get the Mentos into the bottle and the different solutions that we tried but didn’t work – it just brought our bond closer. Also, when we went to go pick up the application for Wendy’s, she helped me answer questions I wouldn’t have known and let me put her down as a reference. It meant a lot to me.

CN – I can’t pick just one favorite memory! I think my favorite memory has been getting coffee with Alexander and showing him how to register to vote. So many young people don’t even care about this important civic duty. It was amazing discussing this process with him! I think he might be more into politics than I am!


What has been most beneficial to you by having Christina as a mentor?

AH – Most beneficial? Woo! Oh man… Being able to put her down as a reference for a job, being able to say I’ve known her for about 3 years and have someone who could say I was a hard worker helps. Also, she helped me get to RAMP when I needed. Helping me get through school, my homework, talking me out of and diffusing situations that were hard like getting suspended and, helping me find alternates to stay out of trouble.


Christina, what do you like about being a mentor?

CN – Being a mentor has given me an opportunity to guide someone not much younger than me on the very tumultuous journey called life. I am so grateful that I get to be someone in Alexander’s corner. Every time he has told me that I taught him something, or I helped him achieve something, I get a sense of happiness that cannot be obtained elsewhere!


Do you plan to continue your relationship even though you both are now states away?

AH – I hate the fact that she is states away! Nothing will change our relationship though. I plan to stay in contact with her and I know I can contact her whenever I need her. When I graduate, I hope to invite her to my graduation.

CN – Since I just relocated quite a few states away, my main goal is to keep in touch with Alex. Most importantly, I want him to continue to know that I will always have his back and that I will always be available to give him guidance. In my opinion, distance shouldn’t and will not affect mentorship!


Do you have any big plans for the future?

AH – I look forward to graduating high school, going to college and law school, and pursing my law dreams.

CN – My plan here in Georgia is to actually make working with youths like Alex a full time career! Until then, I have recently taken a position as a Lead Teacher, allowing me to educate while mentoring less experienced teachers. My experience as a mentor is something I tap into daily, if not hourly, as I train and guide other teachers. There is a powerful mentoring effect demonstrated by research and the experiences of young people, just like Alexander, who are connected to a mentor. Mentoring is linked to improved academic, social, and economic prospects for people, and ultimately strengthens our community. Personally, it has been a joy to watch Alexander grow up physically, socially, emotionally, and mentally before my very eyes as he continues to strive towards his career aspirations and reach goal after goal after goal. He has been steadily employed for over a year, most times at two locations, has made thoughtful decisions when it comes to his friends and social life, all while completing his high school education by attending night school, a decision he made to stay out of trouble and focus on his course work. His story is why I do what I do as a Mentoring Coordinator. I couldn’t be more proud and plan to be cheering him on at his graduation.


Related Resources

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We ALL Need Mentors!

The following blog is a cross-post from Disability.blog, the official blog of Disability.gov. The blog is co-written by Jennifer Sheehy, Deputy Assistant Secretary, U.S. Department of Labor’s Office of Disability Employment Policy, and David Shapiro, President and CEO, MENTOR: The National Mentoring Partnership.

National Mentoring Month

Mentoring, at its core, guarantees young people that there is someone who cares about them, assures them they are not alone in dealing with day-to-day challenges, and makes them feel like they matter. Research confirms that quality mentoring relationships have powerful positive effects on young people in a variety of personal, academic and professional situations. By preparing young people for college and careers, mentoring also helps develop the future workplace talent pipeline. Mentors can help prepare their mentees for professional careers and assist with their workplace skills. Ultimately, mentoring connects a young person to personal growth and development, and social and economic opportunity.

Yet one in three young people will grow up without this critical asset and youth with disabilities tend to have even fewer mentoring opportunities.

To affirm the importance of mentoring, every president since 1990 has proclaimed January to be National Mentoring Month. In his 2016 proclamation, President Obama declared that “[w]hen given a chance to use their talents and abilities to engage in their communities and contribute to our world, our Nation’s youth rise to the challenge. They make significant impacts in their communities and shape a brighter future for coming generations.” The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) and MENTOR: The National Partnership, are collaborating on this blog to help ensure the inclusion of people with disabilities in the movement to expand mentoring opportunities for all.

Jennifer Sheehy: ODEP recognizes the value of policies and programs that effectively increase mentoring for youth and adults with disabilities and that build bridges to the workplace. To develop and influence disability employment-related policies and practices, ODEP sponsors five policy and technical assistance centers. One of these is the National Collaborative on Workforce and Disability for Youth (NCWD/Youth) – a partnership to promote success for youth with disabilities entering the world of work.

The NCWD/Youth website houses numerous youth-focused resources, developed in collaboration with ODEP, including the Guideposts for Success, and extensive information related to career development, professional development and youth development and leadership. The guidance includes mentoring activities designed to establish strong relationships with adults, peer-to-peering mentoring programs, exposure to role models, self-advocacy training, as well as promote awareness of disability history, culture, and public policy issues. I urge organizations and individuals to use these tools to help improve outcomes for all youth in transition towards independence.

Our nation’s disability mentoring programs are making strides in delivery of a variety of models, including one-on-one matches, group, peer and e-platforms. Many of the organizations sponsoring mentor programs are now collaborating as part of the National Disability Mentoring Coalition (NDMC) to strengthen the quantity, quality and impact of disability mentoring on employment, community inclusion, and quality of life. I applaud this collaboration and encourage the development of new strategies to ensure more individuals with disabilities are included in mentoring programs – as both mentors and mentees. I myself have immensely benefited from the guidance of mentors in my career, and I am gratified to see many of my mentees succeeding professionally and personally.

[NOTE: In October 2015, Ms. Sheehy was named as one of 25 outstanding leaders as the first inductees into the Susan M. Daniels Disability Mentoring Hall of Fame. The inductees were selected by the NDMC for their demonstrated commitment to mentoring and for the impact of their contributions on improving the lives of people with disabilities.]

David Shapiro: Mentoring revolves around a common need – the need for supportive, caring relationships. This need is universal and applies to all people no matter their circumstance. Ultimately, the goal of the mentoring movement is to increase access to these quality relationships, as they have been available to far too few young people. But the movement can only reach its full potential, just as we can only reach our full potential as a society, when it is inclusive.

There are a number of circumstances that can result in isolation and disconnection and living with a disability is one of them. The essence of mentoring is to break down these barriers, to turn isolation into connection. It is for this reason MENTOR and our network of affiliates have long stood committed to inclusion in mentoring and are proud to partner with NDMC in striving to more fully integrate training and technical assistance on inclusion in youth mentoring programs. This collaboration will positively impact youth with disabilities across the nation by assisting with their transition to independent and productive lives. It is informed and bolstered by the work we have done with the Corporation for National and Community Services, the experience of Partners for Youth with Disabilities and so many leaders in the movement to close the support and opportunity gap for all young people.

In conjunction with National Mentoring Month, we are launching MENTOR’s signature campaign, In Real Life, which seeks to build public awareness of the real-life benefits of mentoring and highlights opportunities to increase and deepen the impact mentoring can have. Naturally, this is the perfect time to increase our support of both mentees and mentors with disabilities – in real life, we live in a diverse society where all young people should have the opportunity to experience the benefits of having a mentor and where our common humanity and connection is our greatest asset.

ODEP and MENTOR look forward to improving mentoring outcomes for youth and adults with disabilities in January and throughout the year. All people, including those with disabilities, should have access to a mentor. As we begin this journey, we ask the disability and mentoring communities to share their thoughts, hopes and stories in social media using #MentorIRL and #DisabilityMentors.

About the Guest Bloggers

As Deputy Assistant Secretary of Labor for Disability Employment Policy, Jennifer Sheehy leads the Department’s Office of Disability Employment Policy (ODEP) and advises the Secretary of Labor and internal agencies on how departmental policies impact people with disabilities.  Ms. Sheehy actively supports the agency’s signature issues including integrated employment, accessible technology, federal employment and new rules designed to strengthen Federal contractors’ responsibilities to recruit and retain people with disabilities.  Prior to her work in ODEP, Ms. Sheehy spent 10 years at the U.S. Department of Education working in many roles, including Director of Policy and Planning in the Office of Special Education and Rehabilitative Services (OSERS).  Other career highlights include senior positions with the Presidential Task Force on Employment of Adults with Disabilities and the National Organization on Disability.

David Shapiro is the President and CEO of MENTOR: The National Mentoring Partnership, the unifying champion for expanding quality youth mentoring relationships. MENTOR was founded 25 years ago to build and activate a mentoring movement. Since then, the number of mentoring relationships has grown from 300,000 to more than four million. MENTOR’s strategy incorporates policy expertise and advocacy, public awareness and mobilization. The organization bridges research to practice, and develops and delivers standards, training and tools. MENTOR works in collaboration with its national network of affiliate Mentoring Partnerships.

Under Shapiro’s leadership, MENTOR has been highlighted by the Social Impact Exchange, the Stanford Social Innovation Review, and Grantmakers for Effective Organizations, and was selected by the U.S Department of Justice Office of Juvenile Justice and Delinquency Prevention to establish and lead the National Mentoring Resource Center. Shapiro was previously the CEO of MENTOR’s Massachusetts affiliate, Mass Mentoring Partnership (MMP). He chairs the Mass Nonprofit Network board and serves as a volunteer leader with America’s Promise Alliance and the National Human Service Assembly. Shapiro is a husband, father and mentor.

For more about information, please visit: ODEP, MENTOR: The National Partnership, and National Disability Mentoring Coalition.

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So How Can You Join a Board?

Headshot: Jason FarrBy Jason Farr, Program Associate, with the National Collaborative on Workforce & Disability for Youth at the Institute for Educational Leadership.

Are you looking for a way to build your professional and leadership skills and give back to your community? Do you know about an issue that affects your community and feel like you have the knowledge and skills necessary to make an impact? Volunteering is a great way to do these things, but there is a type of volunteering that can take your desire to serve to the next level—serving on the board of directors for nonprofits and/or community based organizations.

What exactly is a board of directors? As defined in the NCWD/Youth tip sheet on serving on decision making boards, “A board is a group of people who give advice, share expertise, and provide leadership to direct organizations in what they should and should not do.” Board members are not staff, but typically volunteers that can assist the organization in achieving its goals. A good board will recruit members with a variety of skillsets necessary to be effective and take advantage of each person’s own unique attributes.

Group of four youth of different ages participating in a board meetingThe amount of work required from a board varies depending on the organization’s needs. Many boards for larger organizations meet less frequently (often quarterly), are not involved in day-to-day operations, and work primarily on long term strategic planning and the various other higher level activities, like monitoring the organization’s financial position, developing and approving an annual budget, and fundraising. For smaller nonprofits, board members are responsible for the items mentioned above but often take on a role similar to that of a staff person as well by working on operational duties and making a greater time commitment. This is not to say that all boards are like this or that large organizations require less from their board, but many new or small organizations lean heavily on their board to accomplish their mission.

As a member of the board of directors for a small nonprofit called Community Foodworks in Washington, DC, I experienced a bit of both of what I described above. When I joined this board and was elected Treasurer, the organization had one part-time staff person and five board members. In this iteration of the board, our board chair functioned as our Executive Director, and, as Treasurer, I was our finance department. It was demanding, but so rewarding! I was able to take advantage of some of the skills I already had, learn new skills, and give back to my community by providing a critical service for a small nonprofit. Two years in, the organization has grown and we’ve hired two full-time staff, two part-time staff, and a part time accountant. While the organization is still very small, this growth allowed the board to step back while the new staff took over all day-to-day operations. Now the board focuses more on the sorts of higher level needs mentioned before.

Most of you who go on to serve on a board will likely serve a smaller organization, at least to start. In this role, aside from providing input during board meetings, you will almost certainly be asked to volunteer at events hosted by the organization, recruit other volunteers, and do a variety of other things all nonprofits need to do to succeed. And, while you’re expected to come with some of your own know-how, you and the other board members will often find yourselves learning from each other all while getting great teamwork experience.

You may feel intimidated or think you do not have what is needed to serve effectively on a board. You may even have looked up the board of directors for some large national organizations. If you did this, it is reasonable to be intimidated. Boards of national or simply much larger nonprofits often consist of CEOs, Presidents and Deans of Universities, and other people you may consider to be on a different level than you in their professional career. Keep in mind, many boards want a variety of members, including those who are in different stages of their careers or can provide valuable input from their own life experiences. Many organizations, especially those that serve youth, are actively seeking young people to join their boards to ensure their voices are being heard.

So how can you join a board? I started as a weekly volunteer at Community Foodworks and got to know some of the leadership. After putting in hard work volunteering on a program operating in my community, I was asked if I would be interested in joining the board. But you do not have to wait to be asked. If you are good volunteer at an organization and are interested in joining the board, let the leadership know. You may also research the boards of local groups in your area, see if there is a good fit for you, and then reach out to a board member about joining.

For those of you interested in issues affecting your community, developing your skills as a professional and a leader, and learning about managing a nonprofit organization, serving on a board of directors just might be a great opportunity for you.

Related Resources

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Intern Perspectives on Poverty & Disability

Headshot of Mario in front of organization's banner The following blog post is by Mario Carter, an intern with the National Collaborative on Workforce and Disability for Youth (NCWD/Youth) at the Institute for Educational Leadership (IEL). Nearing the end of his internship, Mario shares what he learned from several NCWD/Youth and IEL initiatives.    

One of the more devastating and oft-ignored effects of poverty has been its consequences on people with disabilities. According to statistics from the Department of Labor, “unemployment rates were higher for persons with a disability than for those with no disability among all educational attainment groups.” The study also cites data which shows how people with disabilities are faced with limited employment opportunities. They are also more likely to only have part-time employment or be self-employed. With such a dearth of opportunities, people with disabilities are often forced to live on government benefits which permeates a culture of dependence and prevents them from being able to thrive independently.

This is especially significant for youth with disabilities as they are at the precipice of transitioning to adulthood. Youth with disabilities are far more likely to be impacted by the disparities in education which prevent them from being able to secure quality employment. This can cause them to spend their lives in poverty. If they do manage to find work, it is often sub-minimum wage work and other low paying jobs which make it nearly impossible for them to transition to financial independence. For many people with disabilities, even if they do find employment, they are still in a vulnerable position because the jobs may not pay enough to allow them to be financially stable, but they could lose their benefits.

While there have been attempts at eliminating discrimination against people with disabilities, there have not been enough efforts at directly expanding employment opportunities for them. Congress passed the Workforce Innovation and Opportunity Act which opened additional doors for people who have disabilities to education, adult-transition, and vocational rehabilitation programs. But of course, problems regarding employability remain persistent. Stereotypes regarding mental acuity and capability of performing the tasks of the job prevent people with disabilities from having the chance to demonstrate their abilities.

If people with disabilities are to enter the workforce, then they will need to be presented with legitimate opportunities. The Institute for Educational Leadership (NCWD/Youth’s host organization) has been a national leader in the effort to successfully transition youth with disabilities into the workforce. IEL was recently awarded a grant to administer technical assistance to Vocational Rehabilitation (VR) systems in order to enhance programs and services that will help youth with disabilities in light of the changes to VR rooted in WIOA. NCWD/Youth’s Guideposts for Success serves as a blueprint for preparing youth for entering the workforce by emphasizing broad-based goals that can be used by policymakers and various state vocational rehabilitation officials. IEL has also done substantive work in the juvenile justice system through the Right Turn Career-Focused Transition Initiative. Youth who participate in the program meet with mentors regularly to construct a plan called the Individual Career Development Plan that will help transition them into the workforce and independence. The IEL has also produced literature such as Making The Right Turn and Paving the Way to Work which demonstrate how to expand employment opportunities for youth with disabilities and how to give them the tools to succeed.

With an open mind and greater support from institutions who are willing to engage youth with disabilities by offering opportunities, people with disabilities and those who have been involved in the juvenile justice system can thrive and become successful contributing members of society.

Related Resources:



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FERPA and Postsecondary Education: Information for Families (Part One)

By Sean Roy, Projects Director at PACER Center, a partner in the National Collaborative on Workforce and Disability for Youth.

Youth with disabilities are entering postsecondary education at consistently increasing rates. Traditional 4-year universities, community colleges, and trade/technical schools are seeing more and more youth with disabilities who come through the door seeking skills and experiences that will hopefully lead to lifelong employment. This increase is excellent news to disability advocates who recognize that most of the newly created jobs require some type of education or training after high school.

As one of those advocates, my job is to help families of youth with disabilities understand the importance of postsecondary education and how they can help their youth be successful. Postsecondary education can pose a significant challenge to families who are used to being well informed and involved in their youth’s education. It is sometimes a shock for families to learn that postsecondary institutions do not make it a common practice to communicate with families. What is even more eye opening to families is when the postsecondary institution says it cannot communicate education information, that may include health information, to families due to FERPA.

The Family Educational Rights and Privacy Act (FERPA) is a federal law that gives parents of elementary and secondary schools (excluding those schools who do not receive federal funding) certain rights pertaining to their child’s education records. Among other things, FERPA gives parents the right to have access to their child’s school records, the right to seek amending records if needed, and the right to consent to who else can see information contained in the records. The purpose of FERPA is to insure the privacy of educational records and access to those records for parents.

The aspect of FERPA that tends to take families by surprise is that “ownership” of the educational data switches from the parent to the student once a student turns 18 or attends a postsecondary institution (regardless of who is paying the tuition or the presence of a disability). This means that once a student gets to college, the parents no longer have an automatic right to see data like grades. Permission for that access needs to be granted in writing by the student.

However, an additional FERPA-related issue has been identified by disability advocates. It would appear that some postsecondary institutions are using obligations under FERPA as a reason not to communicate with parents at all. This is problematic for a few reasons. One, we know that students and parents are more connected than ever, and that families can offer much needed support and guidance to students, including those with disabilities. Secondly, youth with certain disabilities may be susceptible to being vulnerable in a postsecondary environment (including those with mental health needs or intellectual disabilities), and concerned families may have no avenue to find information. And finally, such a strict application of FERPA may be inappropriate given specific allowances within the law.

Wanting to clear up confusion around FERPA for families of youth in postsecondary education, I contacted Dr. Tina Falkner, a national expert on FERPA with 15 years of experience. Dr. Falkner’s experience and perspective really helped clarify my understanding of FERPA. Stay tuned for my conversation with Dr. Falkner in Part Two of this blog series!

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Celebrating 40 Years of IDEA: Supporting Youth, Schools, and Families!

Marissa Sanders head shotThe following blog is by Marissa Sanders, an independent consultant Video Interpreter for Sorenson Communications. Marissa Sanders has worked in disability rights for more than 15 years, previously serving as Executive Director of the West Virginia Commission for  the Deaf and Hard of Hearing and as Director of Training for the Mid-Atlantic ADA Center.  

The Individuals with Disabilities Education Act (IDEA), which became law 40 years ago, often takes a back seat to other civil rights laws like the Americans with Disabilities Act (ADA). Of course, the ADA has a wider reach – covering government agencies and private businesses alike. IDEA, however, addresses a more fundamental issue in my opinion: education.

As a young adult just beginning to get involved in the youth with disabilities movement, I remember being shocked at how little focus education issues seemed to get in the broader disability rights movement. I remember thinking, maybe we wouldn’t have a 70% unemployment rate if we had a better education system!

When I was 11 I started having seizures. I was diagnosed with Epilepsy and began trying to adjust to a new reality. I could have benefited from an Individualized Education Program (IEP), but my parents had never heard of such a thing and no one ever suggested it. Within a couple years, I was also exhibiting clear signs of depression, but despite being in counseling, no one diagnosed it or suggested interventions. I also was later diagnosed with Attention Deficit Disorder (ADD).

From fifth grade through my senior year, I managed three disabilities without ever knowing that I had a disability and without access to the incredible disability community who has now become my family. I didn’t know that I had a disability until I was in college and attended a non-credit course on disability and leadership. At that point I became involved in the National Youth Leadership Network and began to learn more about the disability community and disability history.

Had I been assessed in school, I believe I would have benefitted from accommodations like extra time for reading and math, access to my medications at school, increased structure in my schedule, and attention management strategies. Having an IEP also would have made it easier to get accommodations in college, had I requested them. Instead I gritted my teeth and got through high school, only to find myself on academic probation my freshman year in college. Even after realizing that I had a disability and working at disability services at my university, I never requested accommodations. This was partly due to fear of stigma and partly because my depression made the process seem completely overwhelming.

The ADA is seen as the premier civil rights law for people with disabilities, but IDEA, an important piece of disability civil rights legislation, preceded the ADA by 15 years. With the passage of IDEA, we began to see the desegregation of students with disabilities and have seen a small reduction in stigma and discrimination. However, we still see many students with behavioral disabilities or developmental disabilities sent to segregated schools. There still exists a stigma and fear around disability that 40 years of educational access have not erased. I know parents whose children would benefit from IEPs, but who refused them so their child would not have a “crutch” or a label that would follow them throughout and even after school. We have a long way to go toward realizing the dream of full equality and access for people with disabilities.

Fifteen years after leaving college, I am now a foster parent. My six year old foster daughter is in kindergarten. She has not been assessed, but I see signs of mental health issues that may surface in the future. My hope for her is that her teachers will see the value in helping her find effective accommodations for any disabilities that may be in her future. I hope for a future where she will learn about the disability community and our rich history of empowerment not just from her parents, but from her teachers and peers. I hope that as she transitions out of school and begins looking for a job, employers won’t bat an eye at an employee with a disability, that accommodating employees with disabilities will be second nature to them.

My three month old foster son has a condition that may result in a disability or special health care need. As he grows up under IDEA, I hope that he will receive the services he needs under Part C of IDEA and that any supports he may need will follow him seamlessly through each transition he will experience.

We’ve come a long way in 40 years. In my career I have seen a segregated school for students with physical disabilities closed in Chicago, restrictions on seclusion and restraint, and the beginnings of a shift from mainstreaming (placing students with disabilities in classrooms designed for students without disabilities) to inclusion and universal design for learning (designing classrooms and instruction for all students).

We still have a long way to go!  An ideal world would be one where every student has an IEP, where all instruction is tailored to the needs of the child and caters to their strengths. I don’t know that we’ll see that in my lifetime. My hope is that my children will continue the revolution of empowerment and will see more progress in the next 40 years than we have accomplished so far.

As we head into Thanksgiving, I am thankful for all of our disability civil rights laws. I am thankful for those who came before me who ensured that I would be able to attend school and learn alongside my peers. I am thankful for the groundwork that has been laid to protect and expand our civil rights and helps to pave the way for full equality in the future. I hope you will celebrate the anniversary of IDEA and use this anniversary to reflect on the progress we’ve made and the work we have left to do together.

Related Resources

Also, learn more how the federally mandated IEP can be coordinated with Individualized Learning Plans (ILPs) that are used or mandated in numerous states to improve college and career readiness for all students including students with disabilities!




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Work Early, Work Often

The following blog entry is a cross-post from the official blog of the U.S. Department of Labor (DOL). The blog is written by Claudia Gordon, chief of staff in the Office of Federal Contract Compliance Programs at the Department of Labor.

I was recently asked to participate in the Work Early, Work Often video campaign, which was created by the Youth Transitions Collaborative’s career preparation and management working group. This three-part video campaign highlights the importance of work and work-based experiences in an individual’s transition to adulthood, particularly for young adults with disabilities. The videos address some important questions:

Why are early work experiences so important?

Career preparation is critically important for all young people as they transition to employment, but especially for young people with disabilities. As a society, we need to communicate to young people with disabilities as they enter adulthood that they will be expected to find employment and be as independent as possible.

In order to be prepared to enter the work force, young people with disabilities need to gain as many real work experiences as they can, as early as they can. Early work experiences help young people learn about proper business etiquette and soft skills, as well as professional expectations. It can help them determine what type of career they are most interested in and the steps they must undertake in order to achieve their goals.

What role do caregivers and employers play?

This message isn’t just important for the young person with a disability. It’s equally important for parents, family members and caregivers. Sometimes it seems easier for families to shield their child or to protect them from harsh realities. In the long run, the best way to safeguard them is to let them experience those realities and to learn from such experiences so they are better prepared for the world of work. By encouraging their children to have as many work and work-related experiences as possible, families will help encourage independence for the future. As a parent in the video campaign states, “Our job is not to make sure he is okay now; our job is to make sure he is okay tomorrow.”

Of course, work experiences are not possible if businesses and employers do not hire young people with disabilities. People with disabilities are an untapped talent pool, and are known to be loyal, hard-working and dedicated employees with low turnover rates. However, the current unemployment rate for people with disabilities is 10.4 percent, or double that of people without disabilities. If employers review what their job duties entail, they will find that people with disabilities can “sometimes do a better job than just about anyone,” as one employer noted in the video campaign.

To see and learn more about the video campaign, go to www.thenytc.org/workearly or www.youtube.com/thenytc. I encourage everyone to share these videos with their friends, families and colleagues. Please help spread this message to create a mindset that youth with disabilities need to work early, and work often!

Related posts:

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