All Old Single Pages

We are Kids As Self Advocates!

We model leadership and the power of self-advocacy. We are active in our schools, communities, families and places of employment. We share our message with other youth who have disabilities or chronic health conditions, as well as with our friends and peers.

former KASA board member Chad Murphy-Price leading a workshop.

Our activities include:

  • Representing the voice of youth living with disabilities and chronic health conditions by speaking to policy makers at public events and hearings

  • Educating our communities, including students, teachers and administrators at our schools; medical students and physicians; and federally funded cafe and agencies and state programs

  • Serving as advisors to the over 40,000 members of Family Voices across the country and organizations and agengies interested in promoting youth involvement and leadership

Our Theory of Change

In order to make a real difference in our communities and in this country, we work under a Theory of Change. What this means is that we have come up with the change we want to see for youth with disabilities in the U.S. and we have outlined how are working to make that happen. See how this works!

  • The KASA National Advisory Board

We usually have 6-9 young adult and youth leaders
[ages 13-24] on the Advisory Board and as they leave, new people can
apply to join.This is the highest level of KASA project leadership.
The Advisory Board members help create the Annual Operating
Plan, which is a plan that describes the work the KASA project will
do and who will do it,as well as create many of the documents that are on our website and
that we give out to other people and groups.
They also present at conferences and work with other national
and local groups to get young people involved. The KASA Advisory
Board can be a great way to learn how youth can lead a project, and
to gain other advocacy and leadership skills.

The Advisory Board advises policy for the KASA project as a whole, including activities like this website, our newsletter, and meetings.The Advisory Board leads all of the programming for KASA. Advisory Board members are given an opportunity to sharpen their leadership skills. The Advisory Board acts as a valuable resource to the media, professionals and other young adults regarding issues concerning young adults with disabilities.

The KASA National Advisory Board and our members help determine what will be on the website based upon your input and submissions. We hope you will use our website to learn about subjects like advocacy, leadership, health care, education, employment, disability culture, and much more! If there is something you want to learn about that is not on the KASA website, please let us know.

The KASA Board Members

    Hamza Jaka
    Hamza sitting in his wheelchair, holding Ed Roberts Medal of Honor from the California Hall of Fame.
  • Hamza Jaka
    • Age: 22
    • Hometown: Fontana, Wisconsin
    • Years working with KASA: 2007-2014
    • About me: I am a long time self advocate, having worked in local, state and international disability rights for eight years. I graduated from the University of California Berkeley in May 2014. I enjoy learning more about civil rights, and how disability and civil rights mix together. I love studying languages, traveling and exercises and reading, especially Spider-Man

       

  • Lyndsi Holmes-Wickert
    Lyndsi Holmes-Wickert

    Lyndsi Holmes-Wickert

    • Age: 25
    • From: New York
    • What I am involved in? I am currently a special education teacher and that takes up most of my time! In my free time, I enjoy spending time with my family, including my wonderful husband. I also enjoy reading, playing tennis and softball and traveling.
    • What is my disability? I have spina bifida.
    • What do I hope to contribute to KASA? I hope to be able to share my personal experiences in life. I hope to help kids and young adults become future leaders in their communities and learn advocacy skills. I also hope to be able to help communities to be more disability friendly.

       

  • Ronald Tasker
    • Age: 16
    • From: North Carolina
    • What I am involved in? In school I am currently not involved in any clubs but I hope to get involved next year. I am very involved in my community, being a part of several mission trips and retreats per year. I love interacting with our youth.
    • What is my disability? At 6 weeks old I was diagnosed with cerebral palsy. Luckily my disability isn�t as severe as doctors first thought. I talk at ease, use a manual wheelchair, and walk with a walker regularly. I am involved in water skiing and hope to be involved in rugby next year.
    • What do I hope to contribute to KASA? I hope to bring a fresh perspective. I also hope to help youth by sharing my experiences and giving them tips to succeed.

 

 

The KASA National Task Force

  • The national KASA Task Force has 6-9 youth leaders
    [ages 12-18]. The KASA
    Task Force gives advice and opinions to the KASA Advisory Board and
    staff about what information and training youth with disabilities
    need. The Task Force members have the opportunity to help develop
    these materials and also review {look over} what the KASA Advisory
    Board and staff write to make sure it is helpful and clear
    {youth-friendly}. They work together on large projects like reports
    and toolkits on issues they care about. The Task Force members also have lots of opportunities to
    learn. Along with learning from presenters, they are trained in
    advocacy skills and also have opportunities to represent KASA at
    conferences and meetings.Task Force members at the Disabilty Pride Parade

  • Youth on the Task Force get to learn how a project can be led by
    young people with disabilities, with the staff only giving support. 

KASA National Youth Information, Training and Resource Center

What Is the KASA Youth Information, Training and Resource Center?

The KASA project is a project of Family Voices. We have received a grant from the Administration on Developmental Disabilities (US government) to provide information and materials to youth by youth on information that is important for youth to know, in ways that youth want to learn.

KASA believes that young people with disabilities will have control over their own lives and futures. We will do this by informing youth about their rights, providing peer support and training, and changing systems to include us.

How We Get The Work Done

The KASA project is led by a national all-youth National Advisory Board. We also have two staff members. The Center is guided by an all-youth group, the Task Force.

Julie Sipchen is the project director and she oversees the Center as well as all KASA activities. Naomi Ortiz is the project coordinator. She is working full-time to support the Center and the Task Force.

What Does The KASA Task Force Do?

The Youth Information, Training and Resource Center Task Force members give advice and opinions to the KASA Advisory Board and staff about what information and training youth with disabilities need.

How Does This Happen?

The Task Force works with the KASA Advisory Board and KASA project staff. The KASA Advisory Board makes recommendations to the staff about how KASA will do it’s work, what information should be on the website and does the work of putting materials, like tip sheets, together.

The KASA Task Force helps the KASA Advisory Board and staffs by giving advice about what information young people with disabilities need to know. The Task Force members have the opportunity to help develop these materials and will also review {look over} what the KASA Advisory Board and staff write to make sure it is helpful and clear {youth-friendly}. We have one phone call a month to talk about what we need to do and to figure out who is interested in helping with different things.

The Task Force members also have lots of opportunities to learn. They have some training at an in-person meeting as well as opportunities to represent KASA at other conferences and meetings. Youth on the Task Force also get to learn how a project can be led by young people with disabilities, with the staff only giving support.

The Task Force members are:

back to about KASA

Our Theory of Change

Young people with disabilities and special health care needs will have control over their own lives and futures. This will be achieved through:

~ informing youth about their rights ~

~ providing peer support and training ~

~ changing systems to include us ~

KASA’s Guiding Principles:

  • We take risks in our own lives and as an organization. We can take risks because we know we’ll have support and our experiences are showing us that we can do this and be successful.
  • We need to increase the visibility and support for youth with disabilities and special health care needs. We will have enough KASA youth members at adult and youth conferences and meetings in order to be noticed and visible and to provide support to one another.
  • We make it a priority to hire youth with disabilities and special health care needs when we have the opportunity.

KASA’s Mission Statement (what KASA believes the project should focus on)
Kids As Self Advocates (KASA) is a project created by youth with disabilities for youth to educate society about issues concerning youth with a wide spectrum of disabilities and health care needs. KASA believes in supporting self-determination, creating support networks and proactive advocacy for all youth with disabilities in our society.

Our Vision
Our goal is to increase understanding of disability and health care rights as they relate to youth with disabilities and health care needs.

KASA will empower youth to learn how to advocate for themselves and others through better knowledge in areas such as school, health care, technology, and other current issues related to youth.

Through this education youth will start to hold themselves and society responsible for upholding the rights of those with disabilities and health care needs.

Youth with disabilities and health care needs will understand their rights as members of our society, will determine the supports that they need to be independent within communities that are accepting of them as individuals.

back to about KASA

Contact Us!

For general information about KASA, please email us at [email protected]

PROJECT STAFF:
Naomi Ortiz, Project Director
[email protected]
(785) 273-3398

MAILING ADDRESS:
Family Voices inc
2340 Alamo SE Ste 102
Albuquerque, NM 87106
Attn: KASA Project

FAX:
(505) 872-4780

Contact Us!

For general information about KASA, please email us at [email protected]

Phone (Toll-Free):
(888) 835-5669

FAX:
(505) 872-4780

PROJECT STAFF:
Jennifer Thomas, Project Director



Why
Should YOU Join KASA?


There are
many benefits to being part of a national network of youth/young adults
with disabilities and our allies. 

Your
membership is important to KASA. We work to include our members in
meaningful ways in our youth-driven, grass-roots project.

Here are
just a few of the things our members get as being part of KASA—and
membership is FREE for youth. 



Benefits of a lifetime KASA Membership:

All:

Lifetime access (subscription) to our email listserv, full of
opportunities and resources.

Discounts on our reports and manuals.

Access to youth experts on youth leadership and meaningful youth
involvement and/or gain access to youth who can speak at your meetings
and attend your trainings. (See KASA’s “Guide to Presentations and
Technical Assistance” brochure)

Our network features youth and young adult leaders as resource experts
on living in the community, managing our health care, going to school,
advocacy, civil rights, getting a job and much more.

We
provide information on scholarships, conferences and events around the
country.

Just for Youth:

You have an opportunity to give input into the work we do.

You can have your poetry, art and original articles featured on our
website.

You can be part of a cross-country network advocating to change systems
to include US in decision making.

You can raise your own disability awareness—learn about things you don’t
hear about in other places.



 

You will have a connection and opportunity to communicate with other
youth in the disability community in a ‘safe’ place in our forums.

We
spotlight youth from across the nation who are making a difference in
their communities.  You can
get ideas, or you could be next!

  • You can learn about and participate in leadership and speaking
    opportunities.

Membership is FREE for youth, $15.00
for parents, $30.00 for professionals and $50.00 for organizations
(sliding fee scale is available to those who need it). This is a one time fee for a lifetime membership!

 
You can sign up on our website or call/write to KASA at:

3701 San Mateo Blvd. NE, Suite 103
Albuquerque, NM  87110
Ph: 
1-888-835-5669

In Spanish: Beneficios de pertenecer a KASA —
Infórmate acerca de la red de KASA y de cómo puede ayudarte a ti o a algún joven que conozcas.



     

THE KASA BOARD
Meet the KASA Board!

In order to be a TRUE youth organization, we have a National Advisory Board. This Board comes up with the programs and activities for the KASA organization. We work with the Project Director and with the membership to make sure that youth are getting important information in order to make and be involved in educated decisions about their lives. We write some of the pieces that appear on the website and in the mail, we share our experiences and serve as role models for youth with special health care needs around the country. We represent a variety of disabilities, special health care needs, ages, cultures, ideas and perspectives from all around the country!

Our Theory of Change!

In order to make a real difference in our communities and in this country, we work under a Theory of Change. What this means, is that we have come up with the change we want to see for youth with special health care needs and disabilities in the U.S. and we have outlined how are working to make that happen. See our Theory of Change here!

See the KASA Board in Action

Because we are a national network with limited funding, we mostly meet by telephone conference call and through email. As funds allow, we have two face-to-face meetings per year. We use our time together to do specialized training, create and add to our Annual Operating Plan and have fun!! See some pictures!

     
 

KASA Board Meeting July 2003

 
back row:
Naomi, Pete, Mara & Micah

front row:
Maia, Amanda, Mitch & Erin

 
 
 
Erin is explaining something very important!
 
 
 
back row:
Naomi, Micah, Erin & Maia

middle row:
Christina, Mitch & Marlin

front row:
Mara, Amanda & Pete

 
 
 

Micah, Maia & Pete are talking with Naomi
 
 

Naomi & Pete are listening very carefully
 
 
 

Micah, Pete & Naomi are waiting (for what?)
 
 
 

Never too young to advocate! Nora, 5 months
 
 
 
back row:
Micah, Pete, Erin, Naomi, Maia, Mara, Lisa (Diana Fund)

front row:
Christina, Mitch, Julie

We decorated these hats during the meeting. Who says you can’t have fun and work hard?

 
 
 

Mara & Christina bonded over a good dinner
 
 
 

Pete’s hair was the subject of much discussion
 
 
 

Mitch (front) is taking notes on Maia’s presentation
 
 
 

Mara, Micah & Janice (Micah’s mom) on the way to dinner. Does Micah know he still has his hat on?
 
 
 

Mitch is traveling to his dinner “icognito”. Or maybe he is hiding from his mom (behind him)?
 
 
 

Emily, Maia & Erin take time for a pose
 
 
 

All that work and we can still be friends!
 
 
 

KASA Board Meeting January 2004


January 8-11, 2004 we had another face-to-face meeting. We met in San Diego, California at the Hyatt Regency Islandia. It was a beautiful hotel and a beautiful setting. Christina Mills set it all up for us and she did a super job. Because we were in sunny San Diego, we had a “beach theme”. We were actually only about a mile from the ocean and we went to a restaurant on the water for dinner Saturday night. On Friday and part of Saturday we had guests do a special training for us. Jason David and Patrisse Cullors, from NCCJ (National Conference of Communities and Justice) helped us build our skills around diversity and cultural awareness. It was a great training with fun and informative exercises. Of course, we also worked hard on our Annual Operating Plan, discussed funding and evaluation and got to know each other better.

We missed Pete-who couldn’t come because of work, Maia-who tried to come but weather would not let her leave Milwaukee and Naomi-who had several previous commitments at home. We welcomes our two newest board members-Jennifer Thomas and Jen Halpert.

 

Mitch is wearing his lei and is ready to hit the beach
 
 
 

If her smile is any indication, Jennifer T is having a great time so far
 
 
 

Our guest presenters, Jason and Patrisse fit right in with our Group
 
 
 

Jen H is interviewing Mitch to get to know him better
 
 

Jennifer T and Emily are thinking about..???
 
 
 

Back: Jennifer T, Micah, Amanda, Jen H

Front: Mitch & Emily
 
 
 

Can Micah have a better smile?
 
 
 
Another special guest, Micah’s friend Illana, treated us to some raps she wrote herself. She was awesome!!
 
 
 

back: Micah, Amanda, Jason, Patrisse, Jennifer T, Julie

Front: Christina, Emily, Mitch
 
 
 

Micah, Christina and Amanda have fun with our scarves.
 
 
 

Who are these masked ladies? Is this a new fundraising strategy?
 
 
 

After two full days of work, we deserve to get out of the hotel!!
 
 
 

Even Nora got into the beach spirit. Nora at 11 months.
 
 
 

It was close to Emily’s birthday so we celebrated. Does it look like she is enjoying her cake?
 
 
 

Jennifer, Christina and TJ enjoy our last evening together by the water
 
 
 

The big question of the night: Did Micah actually go on that ride that is behind him?
 
 
 

Back: Jennifer T, Micah, Amanda, Jen H

Front: Mitch & Emily
 
 
 


KASA Materials

The KASA brochure is available for you to download:

KASA brochure (pdf: 603K)

KASA brochure – front (jpg: 920K)

KASA brochure – back (jpg: 1,112K)

We also have simple, easy to read “hard cards”. This is a series of three brochures, each of which represents one of our three program focus areas.

Peer Support – front (jpg: 653K)

Peer Support – back (jpg: 819K)

Change Systems to Include Us – front (jpg: 529K)

Change Systems to Include Us – back (jpg: 568K)

Learn Your Rights – front (jpg: 461K)

Learn Your Rights – back (jpg: 641K)

If you cannot access any of these through the web, or if you would like to have us mail some of these to you, please e-mail Julie Sipchen at [email protected] or call her at 773-338-5541.

     

Scroll down for a listing of the latest issues and demonstrations that may be of interest to folks with special needs and their friends.

Higher Education Act
The Higher Education Act is already an Act, but is being reauthorized. That means, that is it being renegotiated or discussed again to see if it needs to be changed, adapted or discontinued. The voices of young people who are affected by this need to be heard. if you would like to know more about this, please read on.

Hate Crimes – MTV
Click here to find out “What is a Hate Crime” and what you can do about them. Also lists a toll-free number you can call to report hate crimes.

University of Alabama vs. Garrett
In Garrett, the Supreme Court ruled that state employees can no longer sue their employers for money damages under Title I of the Americans with Disabilities Act (ADA). The Court held that Congress did not have the constitutional authority to waive the state’s “sovereign immunity,” even if there had been a sufficient record of discrimination, and that the remedies set forth in the ADA far exceeded that which was required to remedy unconstitutional state conduct.

ADAPT RALLY
Christina Mills goes to a rally sponsored by ADAPT against a nursing home in Northern California. Christina also gets educated in advocacy, politics and youth movements.

**If you’re concerned about this judicial activism, then join the National Disabled Students Union on April 17th to send a united and powerful message to the Supreme Court that, “The People’s Right to Equality Comes Before the “States’ Right” to Discriminate!”

To find out about “Leave Out” activities near you, go to the NDSU website

     
     

Scroll down for resources on taking action or networking on issues.

Contact Congress
The best way to express your concern or support for a pending law (bill or legislation) on a particular issue is to contact your elected representatives. Even if you are not old enough to vote, it’s important to make your voice heard. After all, you will vote some day, right?

The first step is to find out who you representatives are. To do that, you have to know your ZIP code. Follow this link to find out who works for YOU in Congress!

Would you like a sample letter to send to your congressperson? If so, click here and you will find one that you can localize and personalize to your particular issue.

NDSU
The National Disabled Students Union (NDSU) is a national, cross-disability, student organization. They recognize all disabled people – those with traditionally recognized disabilities and those who have often been left out of the movement – as brothers and sisters, and recognize all students – those who work to learn, whether or not they are at recognized schools – as colleagues.

**They have developed a Media Tool Kit that can be adapted to publicize any issue and is available in a variety of formats (HTML, .PDF, Text Only and MS Word). Also, check out their Advocacy Packet.

     


Upcoming Events

 

 

1. Disability, Narrative and the Law

February 16-17, 2006

Moritz College of Law, Saxbe Auditorium, Columbus, OH

What is the role of personal narrative in effectively advancing the cause of disability rights, whether in individual cases or in arenas of legislation and policy making? This unique public interdisciplinary conference will draw together researchers from law and the humanities to explore how themes of autonomy and dependency, �normal� and �abnormal,� innocence and fault, sameness and difference all play out in legal discussions about disability and in the self-understanding of persons with disabilities. They will also feature outstanding practitioners to analyze how personal experience narratives concerned with disability bear on actual legal practice, how legal arguments get translated back into individuals� accounts of being disabled, and how tensions may arise between the highly individualized, personal experience of disability and the necessity of developing a pragmatic legal definition of disability under relevant statutory and case law.

The conference is being organized collaboratively by the Center for Interdisciplinary Law and Policy Studies at the Moritz College of Law, the Ohio State University Department of English, the Institute for Collaborative Research and Public Humanities, and the office of the OSU ADA Coordinator. It is supported also by grants from the Ohio Statewide Independent Living Council and the Association on Higher Education And Disability.

For more information visit: http://moritzlaw.osu.edu/cilps/events.html

 

2. Disability Policy Collaboration: The 2006 Disability Policy Seminar

February 6-8, 2006

The Capital Hilton Hotel

1001 16th Street, NW (16 and K Streets)

Washington, DC 20036

Disability Policy Seminar participants come to Washington, DC to find out what is really happening in national politics and on policies affecting people with disabilities. For two days, discussions will occur on topics such as: The Medicaid program, Social Security reform and privatization, Medicare prescription drug coverage, Employment, Disability Rights, Housing, Transportation, and Tax Reform. Participants will then spend the third day on Capitol Hill, educating Members of Congress and their staff on these and other issues important to the disability community.

The Disability Policy Collaboration, in cooperation with our seminar partners, continues to bring national leading organizations in field of mental retardation, cerebral palsy, and related disabilities, as well as state and local executives and affiliates, self-advocates, families, providers and others, to our nations capital for three days of intense public policy discussions/meetings focused issues affecting people with disabilities.

For more information, please go to: http://www.ucp.org/ucp_generalsub.cfm/1/8/12477

or e-mail Richard Price, Director of Communications and Grassroots Advocacy, at: [email protected]

 

3. Rehabilitation Research and Training Center on Blindness and Low Vision Conference on Aging & Sensory Loss

February 8-10, 2006

Creating Roads to Independence for Persons Aging with Hearing and Vision Loss will be held in Decatur, Georgia. Topics include Housing, Community Integration, Psycho-social Adjustment Issues, Assistive Technology, and Transportation/Travel Issues.

Deadline for registration: January 23, 2006.

The goals of the conference are to help participants:

1. Understand the issues faced by seniors with both hearing and vision loss,

2. Identify the best methods to address these issues, and

3. Locate the resources available to assist persons aging with hearing and vision loss.

For further information, check out the Conference Web site:

http://www.blind.msstate.edu/drrpconference2006.html

or contact Ms. Stacy Butler: Voice: (662) 325-3304; TDD: (662) 325-8693, Email: [email protected]

 

4. Learning Disabilities Association (Lda) 43rd Annual International Conference

February 26 to March 1, 2006

Hyatt Regency Jacksonville Riverfront Hotel

Jacksonville, FL

http://www.ldaamerica.us/conference/index.asp

     

Is Anybody Listening?

Students with Disabilities Seek to be Heard as the Higher Education Act is Reauthorized


College and graduate students with disabilities are struggling to receive necessary support services in order to achieve the same level of educational and financial aid as our non-disabled peers. KASA (Kids As Self Advocates) is working with other grassroots youth groups are working toward solutions to the obstacles students are facing.


We call on the disability community to recognize that access to higher education is a key concern for many of its members and to focus on removing financial barriers through advocacy & legislation.


Students will not accept these barriers anymore. This summer and fall Congress will debate the reauthorization of the Higher Education Act. Time is of the essence. We need your help to illustrate the links between education, independence, and financial barriers – to bring disability issues into this policy discussion while there is time to make a difference.


Please become a leader in this effort: Help us make disability issues a key part of the Higher Education Act reauthorization. Talk with others in the disability and education community about the barriers college and graduate students overcome, their disability-related expenses, and the financial aid process. Request a copy of our Higher Education Act public policy recommendations by e-mailing us. Share them with the advocates, students, and government officials you know.


Write to us with your comments and encourage other students with disabilities to do the same. We will use your feedback to make our voices (youth voices) heard!


It is challenging for many students with disabilities to qualify for financial aid and to pay for support services not provided by their campuses or other agencies. Students write:


“As someone who is hearing impaired I require more time to complete my work than the average student. … All of this extra time takes away my chance to have a job”

“I have received little help from my financial aid office as far as my disabilities are concerned. … I am unable to perform work-study because I lack the stamina needed, so my debt will be substantial – around $100,000 when I graduate. … My financial aid package is not sufficient to cover my medical costs and thus we went on Medicaid to help.”

“Because I couldn’t do a 9 to 5 and go to school full time … I had to have student health insurance. Student health insurance will not cover pre-existing conditions for the first year. Therefore, my expenses for my asthma shot through the roof to about $700/mo.” (Students also describe out-of-pocket expenses for academic tutors, readers, personal attendants, drivers, captioned videos, TTYs, medications, medical travel, rehabilitation services, and assistive technology.)

“I am a college student 1/2-3/4 time. I can’t do much more than that…and I am having a hard time keeping up with my work. I have taken out financial aid loans and am worried how I will pay them back on a fixed income. I also don’t know if when I am finished if I will be able to work”

“The conditional forgiveness of my pre-disabled Perkins Loan is dependent upon me falling below the poverty level in Kentucky for three years. … If my disability causes me to fall below half-time I will not be eligible for Stafford aid.”

“Unfortunately, loans may be the only possibility because many disabled students cannot take a full time load that makes them eligible for grants.”

KASA is a national, grassroots network of youth with special health care needs & disabilities. The KASA project of Family Voices was established to promote and improve the lives of youth with disabilities and chronic health conditions through peer empowerment and advocacy and the development of leadership opportunities. We also encourage youth to become more involved in policy-making and implementation as it relates to their health care, employment, education and other issues.

Our project is designed for youth and young adults with chronic health conditions &/or disabilities, their friends and siblings, who wish to learn more about the disability movement, health care advocacy and management, employment strategies and opportunities and the development of a national network of teens dedicated to peer education, leadership and empowerment.

     

WE WANT YOU to JOIN KASA!

We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need. Some of us may not have disabilities, but maybe a friend, brother or sister does and we care about them and want to learn more about how to support the disability community. So, read up, join in and pass it on!

Who we are:

KASA believes young people with disabilities will have control over their own lives and futures. We help this happen by teaching youth about their rights, giving peer support and training, and changing the systems that affect our lives to include us. We represent the voice of youth living with disabilities and chronic health conditions by speaking at public events, hearings, to governors and with other policy makers. We also educate medical students and physicians, and fellow students at our schools. We serve as youth advisors to many Family Voices activities at the state and national levels.

What we do:

We model leadership and the power of self-advocacy. We are active in our schools, communities, families and, in some cases, places of employment. We are proud to be who we are. We share our message with other youth who have disabilities or chronic health conditions, and with our friends and peers.

Among our programs:

The National Advisory Board of KASA advises policy for the KASA project as a whole, including activities like the website, newsletter, and possible meetings. This Board serves several purposes: it leads the programming for KASA; it provides an opportunity for youth to sharpen their leadership skills; and it is a valuable resource to the media, professionals and other young adults regarding issues concerning young adults with disabilities.
The KASA Task Force is our peer mentoring group of younger youth who receive training and guide KASA to make sure all we do is youth friendly and accessible.

The Website:

The website for KASA, www.fvkasa.org, is a place where you and your friends can go to learn about subjects like: advocacy, leadership, health care, education, employment, disability history and pride, and much, much more! The KASA Board and our members help determine what will be on the website based upon your input and submissions. We want to hear from you!

Membership:

Membership is FREE for youth, $15.00 for parents, $30.00 for professionals and $50.00 for organizations [sliding fee scale/lower membership prices are available to those who need it]. You can join by sending us your information in any of the following ways:

  • Send a letter with your name, address, phone number, and email address (if you have one) to: KASA/Family Voices, 3701 San Mateo Blvd. NE, Suite 103, Albuquerque, NM 87110,
    or
  • Email your information to [email protected],
    or
  • Call us at (207) 458-1009,
    or
  • Fax your information to (505) 872-4780,
    or
  • Fill out the online Membership Form below:
KASA MEMBERSHIP FORM
Your Name:

Address:

City:

State:

Zip Code:

Email:

Are you a:

Parent / Family Member ($15 membership fee*)

Professional ($30 membership fee*)

Youth with a disability (free!)


*one time fee
Note: sliding fee scale/lower membership prices are available to those who need it

Would you like a response by (check one)
email
regular mail
no response needed

Comments:


     


Teen eager to cast first vote


Written by LARA MOSSA , Of The Oakland Press

  

Huntington Woods resident Micah Fialka-Feldman, 18, will vote Tuesday in his first election. With him are his parents, Rich Feldman and Janice Flalka Oakland Press photo/LARA MOSSA

November 3, 2002

Stepping into the voting booth Tuesday will mean more to Micah Fialka-Feldman than a pit stop between school and home. For the 18-year-old Huntington Woods resident, it will be a rite of passage. Fialka-Feldman, a senior at Berkley High School, has a developmental disability that makes it difficult for him to read and write, but that has not stopped him from becoming involved in politics and following important issues.

He has been looking forward to his first trip to the polls for a long time

Declaring himself proudly as a Democrat, Fialka-Feldman said he has passed out campaign literature for gubernatorial candidate Jennifer Granholm and other party members. He follows political issues on the Internet with special software that reads text to him.

Wearing a red, white and blue tie with donkeys on it, Fialka-Feldman said he plans to vote for Granholm, along with Proposal K for arts and parks.

“I hope (Granholm) wins. I think it’s a close race,” he said. “I think she will help education. I think she’ll be a good governor who will pass good issues and fight for education and families.”

He also said he plans to vote against Proposal 1, which would eliminate straight-party voting, because he thinks it would cause longer lines at the polls, but he is weighing the strengths of other proposals.

Fialka-Feldman talked politics over brunch Sunday at a party his parents threw to celebrate his first voting experience. Friends and family joined Janice Fialka and Rich Feldman, who also have been political activists, in congratulating their son and cultivating his interest.

State representative candidate Andy Meisner of Ferndale stopped by to show support.

The youth is “a little bit of a legend around here,” said Meisner, a Democrat, who met the Fialka-Feldman family at political events. “I think he’s an incredible person. The thing what’s so moving about him is his passion for social justice.”

The young man with a bright smile stumps for his own cause. Micah Fialka-Feldman said he benefits from inclusion in traditional education classes. Since the second grade, he has participated in regular classes with the help of paraprofessionals and even a high school peer.

“It helps me make new friends,” he said. “It’s fun being with kids who don’t have special needs. We can talk and hang out after school.”

This year, Fialka-Feldman gave a presentation on the peer tutoring program with his peer, Oliver Hersey, a 2001 graduate, at the West Michigan Inclusive Education Conference in Grand Rapids.

Fialka-Feldman has “always had an interest in world affairs, how to make things better for people. He’s a very caring and sensitive person,” said Jill England, an inclusive education specialist who works with the teen. “He’s received a broad, rich education by attending classes with his peers. His teachers have always had high expectations, and he always lives up to them.”

His sister, Emma, 14, had the chance to share her brother’s story at a political rally in Detroit, where she described him as a “political junkie” in her speech to introduce Granholm.

For two years, Fialka-Feldman has been a board member for Kids As Self Advocates, a national youth group for people with disabilities, formed to educate government officials and policy-makers and promote health care issues. Fialka-Feldman participates through conference calls and annual meetings. He plans to attend his third board meeting in Chicago next year. He also participated in a Michigan Youth Leadership Forum for students with disabilities last year and a National Youth Leadership Forum in Washington, D.C. He visited state Rep. Gilda Jacobs in Lansing and met Tipper Gore.

“It’s incredible. He has grown into a very self-confident young man,” said Barbara Cardinal of Taylor, an advocate for people with disabilities. “People have believed in him and helped him believe in himself. Through all of that, he can speak out.”

Fialka-Feldman participates in cross country and track at his high school and is investigating colleges, where he plans to study politics. As he looks toward the future, he continues to give a thumbs up to Democratic causes.

“I’m proud I’m able to vote for the first time,” he said. “I think I will be a good U.S. citizen.”


©The Oakland Press 2002

Micah’s first vote was also covered by the weekly, Detroit Jewish News. Read that article here.

     

     

HATE
CRIMES–from mtv

Current federal law allows federal prosecution of hate crimes based on the victim’s race, color, religion or national origin, and does NOT cover crimes based on the victim’s gender, sexual orientation or disability. In a recent national poll, MTV found that 82% of young adults believe that the law should cover ALL people who are targeted simply because of who they are.

If you agree, send a message to your elected officials telling them to pass comprehensive federal hate crimes legislation now.

First let President George W. Bush and Vice President Dick Cheney know how you feel, then make your voice heard by your members of Congress.

Someone commits a hate crime every hour.

Eight blacks, three whites, three gays, three Jews and one Latino become hate crime victims very day.

A cross is burned every week.

What can you do? More than you think. 89 percent of young adults in America believe that hate crime is a serious problem. Give the government a piece of your mind by sending a message to your President-Elect and Congress.

If you or someone you care about has been a victim of a hate crime, call the National Center for Victims of Crime toll free at 1-800-FYI-CALL to find out how you can get help in your area.

     


Take Our Survey!

 

When we talk about �standardized testing� we are talking about tests that you take where your score is based on how everyone else scored, not by a grade that the teacher gives you. Some examples of this are the SAT�s, tests given by the state to see where you rank compared to other people in your grade, in your state, or some tests that are given to seniors to graduate. You can use other experiences of taking tests to answer the questions, but if you can, please try to talk about your experiences with taking standardized tests.

If you cannot answer a question, or do not have an example, that�s ok. Share what you can.

If you need support or have questions, please call Naomi at 520-881-4672 or email at: [email protected]

Introduction to the issue � standardized testing

1. Does your state require, say that you must, pass a test to graduate from high school?

2. What do you think about standardized testing as it relates to youth with disabilities?

Why this is an issue for youth with disabilities

3. What do you think the problems with standardized testing are?

4. What is hard about taking standardized tests?

5. Talk about a time when you did not get the accommodations you needed to take a test.

6. Describe a time when you tried to get accommodations you needed and they couldn�t provide it or the person responsible was not able to meet the accommodation needs.

7. When you did receive some kind of accommodation to take a test, did you have a chance to explain how it helped, or did not help? Did anyone evaluate [check and see] how it went?

8. Describe how standardized testing makes you feel.

9. How has �No Child Left Behind� affected you?

This paragraph explaining No Child Left Behind is from Andrew. Thanks Andrew!

========No Child Left Behind Summary=========

Signed by George W. Busch the No Child Left Behind act is designed to “bridge the achievement gap” within five years. The government intends to do this by restricting federal funding to schools that do not show improvement. What this means for you is that if your school does not have a plan to bring you, as a disabled person, up to the same level that your fellow classmates are functioning at they will receive less federal money. The bill also provides funding for curtain types of educational methods and allows parents who feel that their child’s school is unsafe or not providing for them to move their child to another public school.

This sounds like a great plan but currently the bill is not funded at all leaving little to no reason for schools to meet its mandates. As a result of this, since States are also responsible, standardized testing has been instituted with cuts in state funding if a school does not show improvement in their test scores. What this means is that law makers think that if a school is making improvements the test grades for third graders, for example, will continue to improve even though different students each year are being tested (this is an example from the State of Missouri).

Solutions, Ideas

10. What can be changed to make taking standardized tests better?

11. Describe some ways you have dealt with taking standardized tests that have worked for you.

12. A time when I got the testing accommodations I needed was when�

13. How did you find out about different kinds of accommodations available to you?

14. What do you want law makers to know about standardized testing?

15. Are there any other ideas or ways you have dealt with testing that might help other youth with disabilities across the country?

16. Anything else you would like to say?

What state do you live in?  

How old are you?  

Please give us your name and e-mail and/or phone number if we can contact you for more information.

Name:  

E-mail:  

Phone:  

Please share these questions with other youth who you know would like to respond!!

 

KASA Web Survey on Materials

  1. I have used KASA produced materials (if NO, skip to question #7)

    Yes

    No

  1. I have used materials from (check all that apply)

    Civil rights/ advocacy

    Staying Safe

    Education

    Prevention and Recovery

    Health

    Work

    Sports, Leisure and Recreation

    Dating and Relationships

    Technology

    Transportation and Getting Around

    Disability History and Culture

  2. I find the materials most useful for (please check one):

    Myself

    Meetings

    Presentations

    Conferences

    Other (please explain):

  3. I found the following most helpful (please check one)

    Info Sheets

    Fact Sheets

    Other (please explain):

     

  1. These are the top 2 (TWO) topic areas that have been helpful to me (please check 2 ):

    Civil rights/ advocacy

    Staying Safe

    Education

    Prevention and Recovery

    Health

    Work

    Sports, Leisure and Recreation

    Dating and Relationships

    Technology

    Transportation and Getting Around

    Disability History and Culture

    Other (please explain):

  1. I have shared KASA resources with the following number of people in the last year (guesstimate, please check best answer):

    1-10

    10-50

    50-100

    100-500

    500-1000

    1000+

    Other (Please explain):

  1. I would like to see more info in the following 2 (TWO) topic areas:  (please check 2)

    Civil rights/ advocacy

    Staying Safe

    Education

    Prevention and Recovery

    Health

    Work

    Sports, Leisure and Recreation

    Dating and Relationships

    Technology

    Transportation and Getting Around

    Disability History and Culture

    Other (please explain):

  1. I have ideas and resources for other materials the KASA can use and/or should develop. Please contact me:

Thank you very much for your help to make KASA a better. More effective project in order to help youth and young adults with disabilities have more control over their lives an futures!!


nyln and kasa

Hi!  We are the National Youth Leadership Network (NYLN) and the Kids As Self-Advocates (KASA) project! 

Kids As Self Advocates (KASA) is a project created by youth with disabilities for youth (ages 13 to 24).  KASA believes young people with disabilities have control over their own lives and futures.  We teach youth about their rights, give peer support, give trainings and work to change the systems that affect our lives.

The National Youth Leadership Network (NYLN) is for young leaders with disabilities (ages 16 to 28).  NYLN helps youth at national, state, and local levels.  Our Governing Board leads the Network.  And our mission is about leadership and education.  We focus on education, employment, and independence. 

We are two national programs for youth with disabilities. We came together to create some documents on important issues to young people. This website is to share these documents with others who also care about these issues.  

Our organizations are different. But we agree on some important things, like:

  • Making sure everyone uses respectful disability language; and
  • Helping people know how to make things accessible.

We have also included information about the other activities and work we do. Please contact us to ask questions, to share ideas, or to work together.  Welcome to this powerful network of youth voices!

Respectful Disability Language: Here’s What’s Up!
 

Check this out for respectful ways to talk about and with people with disabilities.

Download
( pdf | doc | plain text )

Accessibility and Accommodations:
Making opportunity accessible to all

Check this out for ideas on ways to make activities accessible.

Download
( pdf | doc | plain text )

Document Accessibility Checklist

 

Check this out to make documents that you share with others accessible.

Download
( pdf | doc | plain text )

More Information about NYLN

Future Directions Agenda:
Check this out to learn about the priorities of young people with disabilities.  It also shares a checklist of tasks that will help with transition.
( pdf | doc | plain text)

NYLN Pamphlet:
Check this out to get a summary of the services through National Youth Leadership Network.
( pdf | doc | plain text)

More Information about KASA

KASA Youth Friendly/Accessible Language
Check out this tip sheet on accessible language, so everyone can be involved.
View Webpage

KASA Opportunities
Check this out for all the ways to get involved in KASA.
Download (word document)

KASA Benefits of Membership
Learn about why you should become a member of KASA
View Webpage

KASA Website One-pager
Check this out to see all the resources KASA has on its website.
View Webpage

KASA How to Include Youth As Leaders Manual Order Form
Order this manual to learn how to bring in youth as leaders to projects, organizations, and Boards.
Download (word document)

National Youth Leadership Network

www.nyln.org
1-866-480-6565
Portland State University – RRI
PO Box 751; Portland, OR  97207-0751
NYLN is a supported by
portland logo

Kids As Self Advocates

www.fvkasa.org
1-888-835-5669    
2340 Alamo SE, Ste 102;
Albuquerque, NM  87106
KASA is a project of
fv logo

download this page (pdf: 231K | doc: 98K)

An Advocate Is

Self-Advocate: Making sure you are able to get, or access, what you need. Being a self-advocate is fighting for what you as an individual need to go to school, work, live at home or to have access to healthcare. It means knowing what you need and then asking for that support. This may also mean thinking ahead to guess what problems you may have in the future, so you can act and prepare now.

For example: You want to go to a meeting, but you find out it’s held in an upstairs room with no elevator. NEED: You need a meeting to be located in a place that is accessible. ACTION [BEING A SELF-ADVOCATE]: You call those who are organizing the meeting and make a request [ask them] to have the meeting in an accessible place. You also, in a letter, educate and explain to them about what an accessible space means, [like not having any stairs, wide enough doorways, and access to a restroom that is wheelchair accessible].

Acting as a self-advocate can be done in many ways:

  • Figuring out what you need or may need [like an accommodation for a test]
  • Ask questions
  • Talk to those in charge, let them know your needs
  • Write a letter explaining what you need and why they should provide it [give you what you need]
  • Keep records – keep notes of when you talk to people [names, dates and notes of what happened]. You can use this to show others you have been advocating for something over a long time.
  • Find allies to help you get your point across [people who can give you ideas, who could review a letter or go with you to talk to someone]
  • Trust yourself to know what you need, but be open to new ideas and/or ways to meet those needs

Community Advocate: A community advocate is someone who tries to make change for a community. They listen and learn from others in the community about issues and problems that they all share. They then try to create changes in society to help the whole community.

For example: NEED: You and others in the disability community want people with disabilities to have jobs with individual supports and to not have the only option be working in a sheltered workshop. ACTION: You all decide to talk to local agencies to ask them to find money for and to train job coaches. You also write letters to the newspapers and local law makers about the issue and ask for support. You all make a presentation at the city chamber of commerce [where local business leaders meet] and ask them to write a letter of support about people with disabilities working in regular jobs to the mayor. You all go to a mayor and council meeting and ask them to not fund [give money to] sheltered workshops, to instead fund job coaches and job training for people with disabilities.

Acting as a Community Advocate can be done in many different ways:

  • Holding a meeting to talk about community issues people are having
  • Deciding as a group action you want to take, or different ways everyone as individuals can work on an issue. Figure out how you’ll know if you have gotten what you want.
  • Find facts/information to support your cause [this can be things like reports or personal stories people have written about the issue]
  • Doing education [events to teach] with the pubic so they can understand issues
    • Holding a rally
    • Doing public skits or a play on the issue
    • Writing a letter to be printed in the newspaper
  • Trying to change laws, or get new ones passed
  • Writing a letter to or visiting lawmakers [congress people, city council people]

Accommodation – something to make learning easier
Anticipate – thinking about what might happen
Right – what the law says you should get

Rehearse – doing it over and over
Responsibility – what you are supposed to do
Compromise – “giving in” a little to make a “deal”
Support – someone to help you

From: www.ldpride.net/chapter10.htm

download this page (pdf: 295K | doc: 108K)

WAYS OF MAKING CHANGE

Adapted from Gene Sharp, The Methods of Nonviolent Action, Boston 1973

Nonviolently protesting, convincing, not working together and getting involved

  • Writing your opinions – What is the problem?
  • Speaking about what matters to you to other people [public speeches]
  • Writing letters against or in agreement with an idea
  • Having people sign petitions, which are letters many people sign to show they agree with something
  • Using banners and posters to get your message out
  • Writing brochures or pamphlets, which are like little books that tell your opinions about an idea
  • Making newspapers or magazines

Group Work

  • Doing group lobbying, which means talking to people like your local Congressperson or mayor about issues that matter to the group
  • Picketing, which means holding up signs, marching, or yelling about your issue next to a business or office that is your enemy on the issue
  • Holding public rallies where many people can gather to show they agree or disagree with an issue
  • Hold a meeting/training to teach people about your issue
  • Holding vigils, where a group of people meet at an important place, stay for a long time [usually at night with candles] to show they think an issue is important
  • Having public mournings, where people show their sadness if someone important has died or something bad has happened
  • Holding a march where a group of people walk in their town to show their opinion about something
  • Creating a parade to celebrate your issues
  • Having a pilgrimage where many people walk a long way such as across towns or states to show the importance of their issue

Symbolic Acts, which are events that make people think of a bigger issue

  • Giving mock or fake awards that can be funny and get people to think about the issue
  • Having mock or fake elections where people vote to protest how an issue or election is being handled
  • Doing a mock or fake funerals where people go to show that they believe something important has ended
  • Showing respect where important people are buried
  • Wearing symbols like pins, hats, and clothes to show your opinion about an issue
  • Giving things or items to important people that mean something about your issue
  • Taking off clothes to bring attention to your issue
  • Fasting or not eating to force people to pay attention to your issue

Drama and Music

  • Performing skits, plays, poetry, or music in places where lots of people are around
  • Singing songs that tell about your issue

Not Accepting the Situation

  • A “Walk Out” is done by a big group leaving a place they should be, all at once, because they believe something is wrong with the place. Like lots of students leaving school one day because they disagree with the dress code
  • Using silence lets people show their disagreement on an issue because it makes them stand out from the crowd that is always talking about the issue.
  • Not accepting an award or honor from a group can show people you disagree with what that group on an issue

Not Working Together and Meaning it

  • A big group, like a city or a state, not having sports’ games or parties to show they are angry about an issue
  • Boycotting, not being a part of things, like parties or dances because you disagree with something about them
  • Having a student strike. This is when students do not go to class because they disagree with something the school has done
  • Not going to places you disagree with something about like a club or church

Economic Boycotts are when people don’t buy certain thing to make a point

  • Boycotting businesses happens when a group of people disagree with a business about an issue and decide not to buy anything from there
  • Going to only certain stores to buy things because you agree with them on issues
  • Having a stay-in strike means that a group of people stay in a store or business refusing to leave to show their opinion on an issue
  • Giving stuff away and not buying stuff you don’t need
  • Not paying rent on your house
  • Not putting money in certain banks that you disagree with
  • Not paying money you owe to people or certain places because you disagree with them on certain issue

Ways People who Work Protest

  • A protest strike happens people who work at a certain place all stop working at once to show their opinion on an issue
  • A work slow-down happens when many people who work at a place slow down doing work or making stuff to show their opinion about an issue
  • A sick-in strike happens when people who work at a certain place all call in to say that their sick to stop work at the place to show their opinion about an issue
  • A general strike happens when people who work from different businesses stop working all at once to show their opinion about an issue

Not Getting Along with the Government

  • Boycotting elections is when a lot of people together do not vote in an election to show that they disagree with something about the government or election
  • A group of people may refuse to leave a public place when they are told to leave by the police or others to show they disagree with something about the government
  • People may refuse to go to war or leave the country because they disagree with something the government is doing
  • Civil Disobedience is when people refuse to obey a law to protest it
  • Many people may try to sign up for something that the government is doing to show that it isn’t working

Using Your Body to Protest

  • A sit-in happens when a group of people just sit in a place like a business or a government office and refuse to leave to show their opinion on an issue
  • A stand-in is like a sit-in, instead of sitting a group of people stand up and refuse to leave a business or a government office to show their opinion on an issue
  • A ride-in happens when a group of people ride a vehicle like a bus and refuse to get off of it to show their opinion on an issue
  • A wade-in happens when a group of people go into something like a fountain and refuse to leave in order to show their opinion on an issue
  • A pray-in happens when a group of people pray and refuse to leave a place like a business or government office in order to show their opinion an issue
  • A speak-in happens when a group of people take turns talking at a place like a business or a government office and refuse to leave to show their opinion on an issue
  • A hunger strike happens when a group of refuse to eat for a long time in order to show their opinion on an issue

Make Your Own Ideas Work

  • People trade work. For example you can baby-sit for someone and then they could help you fix your car
  • Set up team bike rides or car pools where people ride together to a certain place
  • Make a website that gets your opinions out there

download this page (pdf: 196K | doc: 97K)

Steps for Fixing a Problem Where Everyone Is Happy

  1. Name the problem you want to fix
    Listen to every one and figure out:
    • Who cares about the problem?
    • What are all the things going on with the problem? What do you think is making it a problem?
    • What does everyone, all the different groups, who care about the problem really want?
  2. Ask how people feel about the problem
    • Explain how you feel without putting other people down.
    • Don’t talk too much about different things that haven’t worked to fix the problem in the past.
    • Speak for yourself, only what your opinion is. Don’t say what how you think others feel. Say what you really mean.
  3. Think of ways to fix the problem
    • Get people to give as many different ideas as they can think of to solve the problem. Don’t talk about the ideas yet, just write them down.
    • Remember to be creative [think of different kinds of ways]. See KASA’s tip sheet: Different Ways Of Making Change
  4. Decide how to fix the problem
    • Look over the different ideas people came up with. Talk about them and see which ones everyone thinks would work. Pick the ideas people like to and make the problem better.
  5. Everyone agree to act
    • Everyone agree to work on the ideas to fix the problem.
    • Figure out a time in the future to meet and to check on how the ideas are working.
    • End things with something nice like a handshake, smile or hug.

download this page (pdf: 204K | doc: 93K)

Leadership Tips

A good leader works with other people towards a goal.
What do you want? [to happen, to change, to create]

Some important questions for a leader to ask are:

  • What is the issue? [What is the problem?]
  • Who besides you relates to the issue? [Who are your friends/also care about the issue?]
  • Who has the POWER to help you? [Who has the power to help get what you want?]
    • What can they do?
    • How can you best talk to them about your issue?

A Leader. . .

  • Works well with others [good communication skills, can work well with a group of people]
  • Can make a plan with others
  • Is fair
  • Doesn’t take all of the credit [lets people know all of the people who help them]
  • Knows how to compromise [give and take]
  • Looks at a situation from different points of view
  • Is patient
  • Is creative
  • Is flexible [doesn’t always have to have things their way or exactly like the plan describes]
  • Pays attention to what affects their community
  • Is aware of current events, other work people are doing on the issue
  • Can help different groups work with each other
  • Knows what they are good at and what is hard for them to do
  • Asks for help and gives help to others

download this page (pdf: 196K | doc: 97K | doc: en español)

Leading a Meeting

Sometimes it can be hard to lead a meeting. There may be a lot to think about, but here are a few tips to get you started.

  1. Plan ahead
    • Make an agenda [meeting outline or schedule] that lists everything that needs to be talked about at the meeting. Include timeframes in your agenda [how long you want each task to last]
    • Send the agenda out a week early.
    • If someone else has to get any equipment or supplies for you please make sure that you put in your request early to give the person time to get you what you need.
    • Be clear about your expectations for those who come to your meeting, and also about what benefits they may get from attending.
  2. Be a facilitator
    • A facilitator helps guide a meeting and keeps the meeting flowing. This person does not tell everyone what to do. Instead, he or she helps to make sure that everyone has a chance to speak so that the group can make decisions. It’s important to encourage discussion.
    • Help the group stick to the timeframe set out in the agenda.
  3. Have all materials ready
    • Try to have all handouts ready before your meeting. It is helpful to send them out with the agenda. Make sure you also bring copies of all materials to the meeting, and make them available in alternative formats, even if ‘upon request’. [Alternative formats are different ways to share information. Examples of alternative formats are having documents in Braille or on a CD.]
    • Make sure that the wording is as clear as possible to keep others from getting confused.
  4. Smile and believe in yourself.
    • • Know that you can do this. Think of this as practice. You will get better and better each time.

Resources

Leading an Effective Meeting
www.mytutorials.com/learn-1994961
This is a short essay on tips for leading a meeting.

Meeting Basics: Leading a Meeting
www.effectivemeetings.com/meetingbasics/before.asp
This article includes tips for leading a meeting.

Este documento en español.

download this page (pdf: 188K | doc: 52K)

Remembering What Is Important

by Christina Mills

Christina Mills shares her personal experience as a young person going to school when the ADA was first enacted.

The school bell would ring at 11:50am and all my classmates would run off to lunch, laughing cheerfully, as if the best part of the day had finally arrived. Myself, on the other hand, would roll four rows down to the nurse’s office during t hat time, because children like me were not aloud to eat or play on the playground? My fun and excitement was to go from eating my lunch in the nurse’s office to then having one friend join me in the school library.

My third grade year at, South Oceanside Elementary, I will never be forgotten. In 1986, only a few years before the Americans with Disabilities Act was signed, I was treated as an outcast. I was always getting strange looks and never feeling quite comfortable because of the way the school had portrayed my disability to my classmates. I was eleven years old when the A.D.A. was finally pasted and like most people, I had no idea what this A.D.A. meant to me?

Slowly, the schools I attended began to change and sort of except me. It was the warmest feeling I had felt in all of my education, thus far. I was finally able to play four square, handball, and all the other fun playground games that all that “normal” kids got to play. I was even aloud to hang out with more then one friend at a time! Of course, I still had no idea that this was all because of the A.D.A., but I was so happy to feel as if I fit in for once.

Without the A.D.A., I would not have been able to join my High School swim or water polo team because of the able-body vs. adaptive sports segregation that use to be okay. I would not have been able to ride the local bus to the mall or beach because they would not have to be equipped with lifts for wheelchair users. I would not have been able to get into most public places because the door of the business would not have had to be widen for my wheelchair. Most Importantly, I would not have been able to write this article because we would not have such willing agencies working with person that have disabilities. There are so many other great things that the A.D.A. has done for persons with disabilities. It is important to remember the value of A.D.A. as we continue our work in the disability movement.

Before 1990, when the A.D.A. was put into effect, there was little to no history on persons with disabilities. Instead, you would only be able to find medical information on what the disability you had consisted of and what negative effects it was going to have on your body. Luckily, the leaders of our community realized this was wrong and were able to advocate for our rights under the A.D.A. Two presidents ago, George Bush signed the A.D.A. and since then we have been striving towards equality.

The Americans with Disabilities Act has no been in effect for more then 10 years. It is now our job as youth with disabilities to continue this movement in the right direction. I told you the story of my early education because for many of us it is challenging to talk about how hard things can sometimes be.

In effort to keep the movement in full speed, we must all try to remember what is important and how we got where we are today. We should all stand proud of our disabilities and even prouder of the history that got us all here.

download this page (pdf: 186K | doc: 57K)

How My School Has Accommodated Me

by Zach Feist

Zach Feist, a fourth grader in North Dakota, has a hearing impairment. This does not keep him from being active. He tells us about his accommodations in this helpful one-pager.

Hi my name is Zachary Allen Feist. I am 10 years old, and live in North Dakota. I am in the 4th grade. I have a lot of good friends here. I like to play football and basketball, and I am in Pee Wee wrestling. I also like to sing and I like to fish. My favorite football team is the Green Bay Packers. My favorite players are Antonio Freeman and Ahman Green. I also like to play with my dogs. My best friend is in the 6th grade, his name is Kyle. I like all sports and also play baseball in the summer.

I am going to tell you a little bit more about me. I have a hearing impairment. Almost like being deaf but not quite. I have hearing aides in both ears. I just got new ones that are stronger and computerized. They are really neat. If I am in a loud area, I can control how much I hear. Sometimes, I can hear people tell secrets with my hearing aides.

I get help in school for my hearing impairment. I have an IEP*, which is an Individual Education Plan. This is from the federal law of IDEA (Individuals with Education Act). My mom helped me with that. This helps me so I can get a good education like the rest of my class. I am in the same class with the other kids my age. I have a lot of teachers. I have my regular 4th grade teacher, a teacher for the hearing impaired, a speech teacher, and a reading teacher. My favorite subject is Math. The hardest subject for me is social Studies because we have so much work to do in it.

I sit in the front of the class, so I can read the teachers lips as well as hear her talk with my auditory trainer. An auditory trainer is like hearing aides, except the teacher wears a microphone, and I wear the other piece like the hearing aide. It cuts down on all the background noises in the classroom, and wherever she goes I can hear it. Which can be kind of funny. I also have carpet under some of the desks in the classroom. It is to help cut down on the noise in the room. My hearing impaired teacher helps me to understand if I missed something that the teacher said. She and the speech teacher help me to talk better. Last year, our class did a fair on disabilities. It was a lot of fun and helped the other kids understand about how it is for kids with disabilities to live. My friends help me a lot, when I don’t always hear. In Phys. Ed. Class and in music class, I don’t wear my auditory trainer. I wear my hearing aides. In Phys. Ed the teacher knows to look at me when he is talking and telling us what we are going to play. In Music, we are learning sign language for a song in our next play.

I don’t use sign language right now, but know some sign language. Sign language has been fun to learn. It is speaking with your hands. Some of the other kids in Music have to memorize the words but I get the song sheets to follow along with the music. That really helps me. I am with my hearing impaired teacher every day and speech teacher two days a week. I like going to their rooms because we sometimes play games. It is fun.

Sometimes the kids don’t think I can do some of the things I can do. Sometimes it hurts my feelings but my friends keep helping me. They help me so others don’t make fun of me. Especially Kyle. I have a fun time in most everything I do. The kids and I like to share jokes with each other.

Pee Wee wrestling will be starting soon. When I wrestle I don’t wear my hearing aides. The coaches have made hand signals for me to understand what moves I should do during the matches. Usually the referee knows that I can’t hear and they tap me to know when to begin and end. Sometimes I feel scared on the mat because I have had to wrestle kids bigger than I am. I have won a lot of medals in wrestling. I have wrestled for the past 5 years. I really have to do a lot of lip reading.

I have gone to school since I was three year old. I would like other kids with a disability to know that even though sometimes it is harder than for most kids, there are people and friends to help us along the way. We need one another. I hope this will help others. I had a good time writing about my life and disability.

*For more on IEP’s, see www.fape.org. FAPE is the Family & Advocates Partnership for Education (FAPE) project. This is a project, which aims to inform and educate families and advocates about the Individuals with Disabilities Education Act of 1997 and promising practices

download this page (pdf: 43K | doc: 98K)

Advocating for Yourself in Middle School and High School

How to Get What You Need

You should always be able to have the accommodations you need in school for your disability or health care needs. Sometimes it just takes some extra effort to get what you need. Just because you have a disability doesn’t mean you can’t do as well as other kids in school. You have the same rights to succeed. By law, every school has a process (a set way) for you to talk to teachers and others about what you need. Sometimes this plan or process is called an Individual Education Plan [IEP], a 504 plan, or sometimes something else.

Step 1: Evaluate what you need:
Sit down with your parents and decide what accommodations you need based on your disability. For example, extra time on tests, a note taker, or two sets of books. Only pick accommodations that are necessary for your disability. For example, if you don’t need a program on your computer to read your book to you, don’t ask for it. People with different disabilities need different things.

Step 2: Find a helpful resource at school:
A resource at school could be a teacher, vice-principal or counselor who is willing to work with you and make sure you get what you need. Once you find a helpful resource, have a meeting with that person and see what they can do to help you advocate for yourself. This person will serve as your case worker. To prepare for this meeting, ask other kids who get accommodations at school what works for them, or talk to the principal about what is available.

Step 3: Talk to your teachers:
Hold a meeting with all your teachers, your parents and your case worker present. With the help of these people, you should advocate for yourself. The teachers have overall power in the classroom, so it’s important that they understand your needs. If a meeting is not possible, have your case worker or parents write a letter. If you are in high school, talk to your teachers, expressing your needs and letting them know that they can contact your parents or case worker with any questions. If a teacher is unwilling to work with you, see what your case worker can do. If that does not work, talk to the administration (the principal or even your school board) about the problem. Teachers can’t discriminate against you.

Step 4: Have a follow-up meeting:
Several times during the school year, you should stop by to talk to your case worker and let them know how everything is going. Halfway through the year, you should have a meeting with your parents and case worker to talk about what is working for you and what isn’t. Try to have one teacher present also.

Other forms of advocating for yourself and getting what you need:

  • Know about your disability so you can explain it, if needed, to teachers or others.
  • There is sometimes a difference between advocating for what you want and advocating for what you need to get school work done. If you’re not sure, ask a friend, parent or teacher if they think your idea is something you need to get school work done. This doesn’t mean you cannot advocate for what you want in other areas; it just may make more sense to do it at a different time or with different people.
  • You can get extended time on standardized tests, including the SAT, ACT and AP tests.
  • If you feel that a student doesn’t understand your disability, first talk to them and see if you can open their eyes to the wonderful person you are. If that doesn’t work, don’t be afraid to get the teacher or administration (principal or school board) involved.
  • If you feel you are being mistreated by any adult, go to someone you trust IMMEDIATELY.
  • There are other kids who are going through the same things, so don’t be afraid to express yourself.
  • Be proud of who you are, always.

For more information check out:
Beach Center on Disability – www.beachcenter.org/
National Disability Rights Network – www.napas.org
Also, websites about your specific disability may have ideas for school accommodations.

download this page (pdf: 180K | doc: 107K | doc: en español)

Advocating for Yourself in Middle School and High School: How To Get What You Need

You should always be able to have the accommodations you need in school for your disability or health care needs. Sometimes it just takes some extra effort to get what you need. Just because you have a disability it doesn’t mean you can’t do as well as the other kids in school, you have the same rights to succeed.
By law every school has a process [a set way] for you to talk to teachers and others about what you need. Sometimes this plan or process is called an Individual Education Plan [IEP], a 504 plan, or sometimes something else.

Step 1: Evaluate what you need:
Sit down with your parents and decide what accommodations you need based on your disability. For example, extra time on tests, a note taker, or two sets of books. Only pick accommodations that are necessary for your disability. For example, I knew I didn’t need a program on my computer that read my book to me, so I didn’t ask for it. People with different disabilities need different things.

Step 2: Find a helpful resource at school:
This could be a teacher, vice-principal or counselor, who is willing to work with you and make sure you get what you need. Ask other kids who get accommodations at school what works for them, or talk to the principal about what is available. Once you find a helpful resource, have a meeting with that person and see what they can do to help you advocate for yourself. This resource will serve as your case worker.

Step 3: Talk to your teachers:
Try to have a meeting with all your teachers, with your parents and your case worker present. With the help of your parents and others, you should advocate for yourself. The teachers have overall power in the classroom, so it’s important that they understand your needs. If a meeting is not possible, have your case worker or parents write a letter. If you are in high school go talk to your teachers, express your needs and let them know that they can contact your parents or case worker with any questions. If a teacher is unwilling to work with you, see what your case worker can do. If that does not work, talk to the administration [the principal or even your school board], about the problem. Teachers can’t discriminate against you.

Step 4: Have a follow up meeting:
Several times during the school year you should stop by to talk to your case worker and let them know how everything is going. Half way through the year you should have a meeting with your parents and case worker, and try to have one teacher present, to talk about what is working for you and what isn’t.

Other forms of advocating for yourself and getting what you need

  • Know about your disability so you can explain it [if needed] to teachers or others.
  • There is a difference sometimes between advocating for yourself for what you want to do and advocating for what you need to get schoolwork done. If you’re not sure ask a friend, parent or teacher if they think it is something you need to get schoolwork done. This doesn’t mean you can not advocate for what you want in other areas, it just may make more sense to do it at a different time or with different people.
  • You can get extended time on standardized tests, including the SAT, ACT and AP tests.
  • If you feel that a student doesn’t understand your disability, first talk to them and see if you can open their eyes to the wonderful person you are. If that doesn’t work don’t be afraid to get the teacher or administration [principal or school board] involved.
  • If you feel you are being mistreated by any adult go to someone you trust IMMEDIATELY.
  • There are other kids who are going through the same things, don’t be afraid to express yourself.
  • Be proud of who you are, always.

For more information check out::
Beach Center on Disability – www.beachcenter.org
National Disability Rights Network – www.napas.org
Also, websites about your specific disability may have ideas for school accommodations.

Este documento en español.

download this page (pdf: 174K | doc: 56K)

A Great School for Me

By Nate Rennie

When I was 3 years old my mother knew that something was amiss and she sent me to a special pre-K school. The school said I was fine and there was not a problem. I went through kindergarten and the first half of first grade with no problem. But the second half of first grade was a little bumpy and my mom had me tested at the beginning of second grade.

The test confirmed that I was dyslexic. Dyslexia is a special learning disability. It effects reading, spelling, writing and organization. After the test I went to “Special Ed”. There were two teachers there who were not really qualified for teaching dyslexics. I was taken out for reading and any other class that the teacher did not think I could learn. I was in “Special Ed” from 2nd to 5th grades.

I came to the Rawson Saunders School half way threw my fifth grade year. I, for the first time had a one to one reading class with a real academic language therapist (or ALT)). The teacher student ratio was 1 to 3 (as it still is). The size of the school is 42 students. That year was a change. I didn’t learn too much that year. The next year I was assigned a new ALT who got me straight to work. That was also the first year that the Engles were co-directors. They decreased the size of the math class and incorporated a writing class. The next year they bought Alpha Smarts (small computers) so we can learn how to type. This year they are starting the village program.

In Rawson Saunders I am not afraid of making a reading mistake and everyone laughing. I can also ask questions due to the small class size. Another thing is the smaller children are not afraid of the bigger children.

I am in a class with three other students. Both Engles are teaching us. All of the students in their class are going to graduate this year. The Engles are preparing us for high school. They are constantly giving us tests. They also give us a lot of homework.

There have been a lot of successful people with dyslexia, in a lot of ways. The reason for this is they work on their talents instead of reading or organizing. Here are some examples (you might recognize some of these names) in the field of inventors and science; Thomas Edition, and Alexander Bell; for art Leonardo de Vinci and Walt Disney, for military and political strategists General George Patton, Winston Churchill, and Woodrow Wilson with entertainers Cher, Whoopi Goldberg, and Danny Glover athletes, Greg Louganis, Bruce Jenner. Even “Time’s Man of the Century” Albert Einstein was dyslexic.

You can go to www.rawson-saunders.org.

Submitted by Nate Rennie, 12/10/00.

My information is from a book called “The gift of dyslexia” and “Time” magazine.

download this page (pdf: 194K | doc: 60K)

How to Get the most out of your IEP

by Tyler Feist

Tyler Feist, a ninth grader in North Dakota, tells his story about getting his IEP followed:

A special greeting from the Midwest. My name is Tyler Feist; I am 14 years old and live in rural North Dakota. I am a freshman at Edgeley High School. This fall I played Varsity football and my position was flanker and line backer. I like to hunt and fish, which we do a lot of. This summer I had a job working on a farm, which was an awesome learning experience, and will work there again next summer. We have a spot out at one of the nearby lakes, so that is our place of retreat, where I also like to go tubing and skiing.

I’m writing today about how to get the most out of your IEP as a youth. My diagnosis is ADHD/Visual Perception Learning Disability. School is most difficult as it is very hard for me to concentrate. It takes every ounce of energy I have to focus sometimes. Areas of reading and written language are the most difficult. One of the hardest things for me is to be able to express myself when I am overwhelmed during the school day.

I receive assistance in school through an IEP *,which is an Individual Education Plan. With certain disabilities under the Individuals with Disabilities Education Act, a student can receive services to meet their unique needs and goals. In my case, there was a meeting to identify that I was having difficult in certain areas. It was decided at that time, to do an assessment. This assessment was done to identify my areas of difficulty.

Following the assessment, the team met, which included; me, parents, teachers, principle and others to identify how to make changes to the curriculum to meet the needs necessary for me to achieve and learn. All IEP’s will look differently, depending upon our unique needs. At first I was not thrilled about any of it. The Individuals with Disabilities Education Act ensures that children with disabilities will receive a quality education, equal to kids who do not have a disability. To that I say ….Thank goodness we have this great federal law to help us reach our dreams.

A couple years ago, I went to a conference with my mom. Mike Auberger, from the group ADAPT* was presenting. He told me “you need to learn to advocate for yourself as your mom isn’t always going to be able to do it”. Those words ring in my ears a lot.
Some of the accommodations that I need are:

  1. Have tests read for me, outside of the classroom,
  2. sit in an non-distracting area,
  3. for reading books I have modified points and am able to use books on tape of which I can either test orally or on the computer,
  4. classroom notes from the teacher are provided for me (my handwriting is difficult to read) and I can also use a laptop for taking notes because of my handwriting. I have a teacher for learning disabilities that assists me pull things together to make sure that I am getting everything done. We use a planner between home and school so there is consistency on what I have done and not done. She helps me to stay organized, when at times it is difficult for me to follow through. Darlene, my LD teacher is one of the most important keys to my success. She understands me very well. She knows for sure when I am pulling her leg and always has an understanding ear. I couldn’t do it without her. If there is something that is working and I have some thoughts on what could work better, she always has an open heart and mind.

I think one of the very things that are a must in making your IEP work for you is understanding and communicating what is in it. That begins by being a part of the IEP team. I used to walk around outside, while the meeting went on inside and was very nervous about what they were saying. I think I was 10 or so at the time. My mom sensed that this bothered me and from that point on I attended the IEP’s. I really think it is important to state your feelings on what works and what doesn’t work. After all, this is a program designed for your uniqueness. It is a bit frightening sitting there with all of those people, but the one thing to remember is they are there for you.

There have been times when my mom has had to go into the school on my behalf, but that is becoming less frequent. Mom has always said that they key is communication, communication, communication. If they don’t know, they can’t help you. Short and long term goals are written for you. You have input. The new regulations of the law has made it very clear the importance of parental input and input of the student.

I have had to speak with the principle when I felt that my IEP wasn’t being followed. The first time I was rather scared to talk to him, but it is important to do. I am sure that at times it is easy for teachers to forget, they are only human. But I also feel it is important for them to follow, as your success is dependent upon your program.
There have been times that I have gotten down and depressed because of school and feeling misunderstood. At those times it is very important to keep your head high, and don’t let anybody distract you from your dreams. This hasn’t come easy. I have had support from a couple older friends that have the same thing as myself. One is now a senior and the other has graduated but they have told me to NEVER GIVE UP and NEVER GIVE IN! You have to keep on pushing for your rights.

*For more on IEP’s, see www.fape.org. FAPE is the Family & Advocates Partnership for Education (FAPE) project. This is a project which aims to inform and educate families and advocates about the Individuals with Disabilities Education Act of 1997 and promising practices.

*ADAPT stands for the American Disabled for Attendent Programs Today. Attendant services are assistance with things like dressing, bathing eating, getting in and out of bed, helping with a check book or reminding someone to take a pill. Attendants work for a person with a disability, doing tasks that person can’t do alone.

Nationally, ADAPT is a non-profit organization which focuses on promoting services in the community instead of warehousing people with disabilities in institutions and nursing homes. Attendant services (help with things like eating, dressing, toileting, moving from wheelchair to bed, etc.) are the cornerstone to community-based services for people with severe disabilities. ADAPT is working to get 25% of the Medicaid long term care funds redirected to pay for a national, mandated attendant services program. More on adapt, see www.adapt.org.

download this page (pdf: 151K | doc: 55K)

On the College Front

by Maia Wroblewski

What is college really like for a person with a disability? Pretty much the same as a person without a disability, or at least this has been my experience. I have had to make a few arrangements to inform my professors about my disability and the accommodations I need, but I have enjoyed being “just another freshman.” Its not the best label in the world but it’s better than “that girl with a disability.” I chose to go to a very large school, the University of Wisconsin – Madison. Although it can be overwhelming sometimes, it has really been nice to just blend in. It is amazing how different college is from high school. You have so much freedom, you almost don’t know what to do with yourself. The classes are harder, but they are for a shorter time during the day, and I can choose the time of each class. It allows me to plan around my schedule and my needs.

I recommend that if you do have a disability that you contact the disability center on the college campus. They are experienced people who have helped many other students receive an equal education. It is a really helpful step in your college education. The dorms are really awesome and I suggest that if you have the choice to live there that you take it. I have met some really cool people, and have created some really cool study groups with people from my dorm. The dorm also allows you to have some freedom from your parental units, you decide what you eat, when you go to bed, and how your room looks, its great! Parties? I haven’t really attended a lot of parties, but as long as you use good judgment they are really fun.

Class is okay, and the professors are definitely interesting. My suggestion is to sit in front of the classroom. The first row, or aisle seat (called the T-zone) will allow the professor to see you, without you having to answer questions. If you do ask a question, that’s even better, the professor is more likely to remember you as “the student who paid attention.” Well, that’s all I have for now, but I’m sure there will be more.

Maia is a freshman in college and has been advocating for herself since she was two. Maia is co-chair of the KASA board. Let us know what you think, send an email to [email protected], attn: Maia.

 

download this page (pdf: 178K | doc: 54K)

I wanted to go to college and my dream came true

by Micah Fialka-Feldman

I wanted to go to college and my dream came true. Here’s what happened.

I always wanted to be with my friends. When I was in first grade I was in a special classroom. It was okay but I wanted to be with my friends so I told my mom and dad that I wanted to go into the same door at school that all the other kids were going in. They helped me do that.

Then when I got older I started thinking about what college I wanted to go to. My friends wanted to go to college and I wanted to do the same thing. Since I was little I’ve been going to the University of Michigan football games with my Papa. I learned about college from going to the games and seeing the kids have a good time. They looked happy. I have always been included in regular classes so I wanted to stay in regular classes after high school. When I was in sixth grade I had a MAP (Making Action Plans). My friends, teachers, and parents helped me think about my dreams for my future. One of my friends said that I would go to college. I liked hearing that because that was my dream.

I want to work in politics, maybe in government or at our state capital. I also like current events and I like to do public speaking at conferences, universities, and other places. I tell people about inclusion, disability rights and self advocacy. I can learn about these things in college and be with my peers. I didn’t want to go to a segregated program after high school.

My parents learned about a college program for kids with cognitive impairments at Eastern Michigan University. I visited the program with some of my teachers, my parents and Michele Harmala from Oakland Schools. I liked it a lot and thought it was a cool program for kids with disabilities who wanted to learn on campus and be with their peers. The teacher was John Rose. He was cool and funny.

Then we went back to my school and had LOTS and LOTS of meetings. Many people started having the same dream that I had about going to college, so they helped me.

My high school and my parents helped me get ready for college. They helped me learn a lot about computers, using a palm pilot, running my meetings, being in clubs, and learning how to be a self advocate. I know how to use the computer to write my papers. I can do look up information on the internet and I can use a program that reads everything to me. I also learned to talk into the computer and then it writes what I say. It is called Dragon Speak. My best teacher in high school was Ms. Berke. She helped me learn more about using the computer. She also helped me plan before every one of my meetings so I knew what I wanted to say. I learned how to tell my teachers what I wanted. Ms. Berke listened to me and helped me get my dream. She was the best! During high school, I also attended the Michigan Youth Leadership Forum and the National Youth Leadership Forum which helped me learn about my rights. I am a member of a Board Member of national youth advocacy group called Kids As Self Advocates (www.fvkasa.org). I learned a lot from these groups. They helped me to feel proud.

Two days after my 19th birthday, I starting going to Oakland University in Michigan. That was one of my best birthday gifts. A lot of people didn’t think that it could happen but my team believed in my dream. I learned how to take public busses to get to the college campus. I learned how to post flyers at the university so I got someone to drive me to school on some of the days. My new teacher, Suzanne James is helping me find good classes to sit in on at Oakland University. She is working hard. Next semester I am planning to sit in a speech class, a political science class, and a social problems class. I think I will learn a lot. I volunteer at the child care center on the campus. I am also in the social work club and Hillel, which is a Jewish organization. I am learning how to be a leader and how to do community service. I know my way around the campus and I have lunch with friends. I like being a college student. I think I will learn a lot. I am proud to tell people that I am a college student. I am happy. My dream came true.

(This article will be published in a forthcoming book to be published by The National Center for the Study of Postsecondary Educational Supports [NIDRR], University of Hawaii. Please contact the author, Micah Fialka-Feldman for permission to reproduce this article.)

 

Dr. Michael Peterson from Wayne State University made a website for me. He used my Power Points and added some things. You can get to it by going to here. Then click on the left side “Video Project”, then scroll down and click on “Micah in High School.”

From the 100 Minority Scholarship Gateway List

Created by Black Excel

download this page (pdf: 182K | doc: 57K)

The STAR Mentoring Program at Dartmouth College

by Mara Buchbinder

Mara is a student at Dartmouth and has been very involved in the STAR Mentoring program.

I was diagnosed with Crohn’s disease at twelve years old. Crohn’s disease is an auto-immune condition in which the body’s immune system attacks the digestive system, resulting in ulceration of the digestive lining, and unpleasant symptoms such as cramping and bleeding. Because my illness is not a visible one, for many years I tricked myself into thinking that if I hid my Crohn’s disease from other’s, that it would not affect my life in any way. For a while, this strategy worked. I took my medicine, got plenty of rest, and took good care of myself, and I seemed pretty healthy to the outside world.

When I started college three years ago, however, I found myself having a more difficult time maintaining my health. The transition to college was difficult for me because I was adjusting my eating, sleeping, and drinking habits in the effort to be a “normal” college freshman, and I found myself encountering a host of factors that made it difficult to cope with my Crohn’s disease. It was then that I realized that compared to my friends, who didn’t have as many worries and responsibilities as I did, I wasn’t normal. Whatever that means!

One of the things that helped me through this transition was that I became involved in a mentor program that matches Dartmouth College students with chronic health conditions with local adolescents who have similar diagnoses. The program, called STAR Mentoring, stands for Steps Toward Adult Responsibility, and is based out of Dartmouth-Hitchcock Medical Center. The STAR program is run by Dr. Mark Detzer, a Clinical Psychologist, and the mentoring component is run through the Tucker Foundation for community services at Dartmouth, where Dr. Detzer is aided by student volunteers. Dr. Detzer and student coordinators work in conjunction with nurses at DHMC and the director of the College Health Center and the disabilities coordinator to facilitate matches.

During my freshman year, I was matched with a teenage girl who had Crohn’s disease. We found that we had undergone many of the same experiences, and were able to relate to each other and support each other. I also learned a tremendous amount of factual information about my illness from her. It didn’t take long before the relationship developed from a mentor-mentee dynamic to a friendship.

Now I am senior at Dartmouth, and I have been the co-chair for the mentoring program for the past three years. I have mentored for four different individuals with Crohn’s disease, through face-to-face contact, and often with e-mail or phone contact when distances or health status made that impossible. Now I help facilitate the matching process, recruit Dartmouth students, and plan social events for STAR members, like ropes courses and going to sporting events at Dartmouth. Along with several other Dartmouth students I lead dinner groups every other month where the STAR teens come together to discuss issues that face adolescents with special health concerns, such as dealing with medication and side effects, talking to friends about their condition, and advocating for special needs or attention at school.

It has been a great experience for me to be able to come together with a group of optimistic, understanding, and articulate individuals, all of whom share a common link with me. I have met some of the most interesting and impressive people through this program. Besides that, we just have fun, with dinners, retreats, and activities. While I feel that I have made a positive impact on the STAR program by acting as a supportive role model to younger teenagers, I have also taken more from it in learning, growth, and life experience than I ever could have hoped for when I was a freshman.

Links
About the STAR program Finding our Way (teen/parent stories)
Nine Stories (teen stories)

Contacts
Mark Detzer, Ph.D., Program Director 603-650-2671 email
Melinda Kendall, Program Assistant 603-650-2677 email

download this page (pdf: 237K | doc: 68K | doc: en español)

Working with Students Who Have Physical Disabilities

by Naomi Ortiz

This was originally written to help college professors understand the struggles of students with physical disabilities. It is not intended to be comprehensive, but it is a guide that may be helpful. Feedback is welcomed. Send it to [email protected].

Use People First Language
People First Language is a widely accepted way to talk about people with disabilities. In fact in any group or organization made up of people with disabilities uses People First Language. People First Language is the concept of acknowledging the person before the disability.

For example, refer to a person with a physical disability NOT a disabled person, a person with a cognitive disability NOT a retarded person), a person who is deaf NOT a deaf person or better a person who is hearing impaired, people with disabilities, etc.

Terms that are NOT Acceptable and Reasons Why

  • Crippled/Deformed– these terms are often used in the medical profession and many people with disabilities see nothing wrong their bodies and are not waiting to be cured or healed and therefore find it offensive.
  • Handicapped– the history of this word comes from after WW1 and WW2 some of the veterans, who had lost body parts in the war, started begging on the street holding out their army hats to collect money. These people were called “hand to caps”. This word is found offensive in the general disabled community.
  • Differently Abled– this word is often used as a “politically correct” way to describe people with disabilities. The disabled community’s problem with this word is that it often leads able-bodied people to think that if a person has a disability than they must have some other skill to compensate.

For example, if someone is in a chair (wheelchair) then they must be extra smart, or if a person is blind than their hearing must be extra good. Although people with disabilities do learn to adapt it leads to misinterpretations of what it means to be disabled.

Classroom Issues

  • Adaptive technology comes into effect on many different levels, depending on the student’s disability. The teacher needs to be aware of how that adaptive technology effects the student’s work or ability to get things in on time. Disabled students are expected to be just as responsible as any other student, but this is something a teacher needs to be aware of. There is a technology out that many people with disabilities use to write on computers. It is voice activated and prints what a person says on the screen. Yet, this technology is far from perfect. For example it takes me about an hour and ½ to write a two-page paper and that’s if I am completely prepared with an outline and my notes. That is two to three times longer than a non-disabled person.
    A good rule for the teacher is to ask the student what type of adaptive technology they use, then to discuss how that will impact the student’s work.
  • Notetakers–When a student requests a notetaker, the student should be taken seriously. Even if the teacher does not think they give a lot of notes they should make sure the student has a notetaker. If the student after time determines that a notetaker is not needed, then the student can terminate the process.
    • Finding a notetaker- if the student wants the teacher to find a notetaker, than the teacher should make an announcement in class stating “someone in this class needs a notetaker. If you feel you take clear, concise notes, and attend class regularly, than you would be a good person to volunteer. The disability student services provide a stipend for doing this service. Who is able to volunteer?” Hopefully someone will volunteer, if not the teacher should tell people to think about it, then read the announcement again at the beginning of the next class. If still no one volunteers, tell the student to contact disability student services, because they will help the student with other options.
    • It is essential to find a notetaker with in the first few days of class.
  • Testing–Disability Student Services has a lot of options available for the student, but the student needs at least 1 and ½ weeks notice to set these services up. So, if there are any pop-quizzes, small in class tests, or anything off the syllabus, the teacher should plan to make adaptations along with the student. This may mean doing the test orally, by tape recorder, by personal computer/laptop or other options that the teacher and the student can come up with.
  • Field Trips–For day-to-day class, students can usually deal with barriers on their own. Yet, if there are any plans to do any field trips this may take a lot of planning. The teacher needs to talk to the student about their limitations and discuss options.

    For example, accessible transportation might be an issue, especially if the student is in a chair (wheelchair). Some people may use handi-van (an accessible bus service provided by the city) but services have to be requested at least a week in advance, and even then they are not guaranteed. So it may also be necessary to have a back up plan in place.

    • The teacher should call ahead and talk to manager/boss of where ever the field trip is to and ask them how accessible their facility is. This includes the distance between the parking and the facility, where the accessible entrance is in the building, if and where there are any stairs in or outside the building, and if there are elevators or ramps to compensate, if the bathrooms are disabled or wheelchair accessible, and finally does this person foresee any other barriers that would be a problem. If there are problems the teacher should discuss it with the student and come up with accommodations to make it possible for the student to go.
    • The teacher should talk to the student about their mobility issues; they may need to have a chair (wheelchair) even if they don’t use one at school. The teacher should ask the student if they have one already or if the teacher needs to rent/borrow one. If the teacher does need to get one the Disability Student Services may be able to help.
    • If the student needs some assistance during the field trip, some options are offering (to pay if there is an entry fee) for a friend or other person to come along (to push the chair, and/or with other needs). Or, only if the student feels comfortable, having a classmate help them.
    • Most Important: The teacher should not abandon the student. Something is bound to not turn out as planned, if the teacher and the student do not have a back up plan, the teacher may need to be willing to be flexible. They should stay with the student until they have it figured out, and the teacher should be sure the student is comfortable with whatever needs to happen.

Communicating with Students
A teacher should not single a student out in front of the class.
No matter how much a student talks about their disability, in or out of class, the teacher should treat them with the same level of confidentiality as some one who never says a word about their disability. Some ways to do this are to ask to see the student after class, or make an appointment to see them.

General Tips

  • A teacher should be aware of physical barriers in the classroom. If there is a student in a chair (wheelchair) the teacher can remove a chair from the table each day near the door, or make sure a table is in a classroom that has only desks.
  • A teacher can still do activities that move the students around the room.

    For example, if the teacher splits the class into groups they can just make sure that whatever group the student with the disability is in goes to them.

  • The teacher must be also be aware of body language. This means if a student is in a chair (wheelchair) the teacher must not stand over the student and talk down to them, or pat them on the head or shoulder.
  • Another issue many students with disabilities face is parking. The teacher may have to be flexible with tardiness due to the fact that sometimes accessible parking is available and other times it’s not. If the student that day can not find accessible parking they may have to rest on their way to class, hence the tardiness may occur. Or, if they use a university sponsored shuttle service for students with disabilities, they may be late due to the unreliability of the service. As with anything it is best for the teacher to discuss this with the student if it is an issue.
    It is very important if teachers are asking classes to meet in a separate place, other than University property or regular meeting place, that they treat it like a field trip.
  • If a student with disabilities is in your class, it is not the student’s job to educate the class on disability issues.
  • There is a fine line between advocating for a student and letting the student advocate for themselves. The teacher should talk to the student and they should work it out together.
  • Another tip is for the teacher to have a checklist of things discussed on this etiquette list so they can make sure that they cover what needs to be covered.
  • The teacher should, if possible or if needed, write up an agreement with the student, and make a copy both for himself or herself and for the student.

Additional Educational Resources

There are two books I can recommend as good ways to learn about disability issues.

  • No Pity by Joseph P. Shapiro
    An amazing book that looks at the disability rights movement. It is an excellent book to explain to able-bodied people what disability rights is all about and what people with all kinds of disabilities are going through in present day America.
  • Moving Violations by John Hockenberry
  • A great book if you prefer a more personal approach. It is an autobiography written by a journalist in a chair and he does a pretty good job bringing up physical disability issues.

For more on People First Language, see www.kidstogether.org/pep-1st.htm.

Naomi is a student at the University of Arizona. She recently transferred there from another University that did not respond to her accommodation needs.

Este documento en español.

download this page (pdf: 193K | doc: 54K)

Contract with your Doctor

by Maia Wroblewski

Maia, a senior in high school, has a lot of experience with doctors and hospitals. As a result, she has developed a unique agreement with her health care provider, a contract! In this fact sheet, she shares her advice for creating one with your doctor.

WHY DO YOU WANT A CONTRACT
A person might not think that a contract with a doctor is necessary, but it can come it handy. As a person with an illness I can become sick very suddenly. I find myself constantly seeing doctors, and going through procedures that many people do not.

During one unfortunate time, I became sick after the procedure, and had to be hospitalized. I was sick, tired, and did not want to be talking to a bunch of doctors who wanted to know everything. After a night of fluids I felt better, I was hungry, and I wanted to eat, but the doctors felt this was not a good idea. They were not my normal doctor so they did not know that denying me food was also a problem. So because I could not eat my condition became worse. I was hospitalized for three days, and it was something that could have been avoided, if the doctors had listened to me.

I decided that I was not going to let something like this happen again. I have a very good relationship with my doctors, and I did not want my health, and our different perspectives to ruin that. So, my doctor and I have an agreement. This agreement works for both of us, and allows some room for discussion. I would suggest a working agreement, or contract to anyone who would like to have an understanding with their doctor, or feels that they are not being listened to.

HOW TO MAKE A CONTRACT
In the first steps of making a contract the patient, and the doctor need to arrange for some time to talk. Things that should be addressed during this time are:

  • the rules that you will follow;
  • things you will agree to do, or not do, as well as the doctor; and
  • other specifics that apply to you.

The meeting will also allow you and your doctor to talk about how you feel, and to gain an understanding of your needs

Once you have this meeting, then the contract must be written up. I would suggest that the patient be the one to write up this contract, because it gives them the control. The contract should be fair, and include everything that you and your doctors have talked about. Then, the doctor and patient must sign the contract to make it clear that both of you agree.

One thing that I have found helpful, is a bio sheet. When you are sick, or don’t feel like talking to doctor after doctor, a bio sheet is handy. The bio sheet can include your medical background, along with an up-to-date medication list, and past problems. This eliminates the same old questions doctors always ask. You can keep this information, along with the contract in a folder, and you should be the one to hold on to it. That way you always have it.

A REMINDER
A contract is something that both you and your doctor should follow, but patients do have to remember that doctors are more informed in the medical profession than we are. That is why they are doctors, and so if it turns out that he needs to break your contract for medical reasons, the doctor should be allowed to. The contract is only there to make sure that both you, and your doctor communicate, and understand each other.

A WORKING CONTRACT
Contracts come in handy when you are sick, and don’t feel like talking to doctors, or when you want to make sure that a doctor is completely informed before making a decision to do something. Working contracts are a very useful thing.

download this page (pdf: 174K | doc: 51K)

Keeping a Health Diary

by Maia Wroblewski

Maia, a college student, finds that keeping a health diary helps her be independent and take over her health care. She uses the diary to track her health to best inform her doctors, her family and herself.

A health diary is not a normal diary, nor is it like a care notebook. A health diary is a way for you to keep track of patterns in your health, your diet, and other factors. My first health diary was on a calendar, however, they don’t give you a lot of room to write down information. I switched to a notebook, but a date book with one day per page would also work. Write the days down and keep track of anything new or unusual you might eat. Also keep track of anything else you feel is important to your health. It could be things such as; the time of day that you are feeling sick; when you take your medications; or specific symptoms that you have. How specific you are depends on how much information it is important. If you are trying to find the cause of a problem such as an allergy or a medication reaction you will probably need to be very specific. I also use it to help me remembers whether or not I took my medicine. It helps to be consistent on what you report in your notebook. It is best to write the note as soon as you notice a symptom or take a medicine. You may not be as accurate if you wait. Using the same descriptions and taking the time to describe things clearly will help you as you refer back to your health diary.
Why is this important?

If, like me, you have problems that can sometimes leave you stumped it is nice to have an idea of any patterns that take place. For example, I began having “unexplained” pain and could not figure out what the cause was. I changed my medications, tried different doses, and nothing changed. I was itchy, sick and uncomfortable. I began keeping track of my health during the changing of my medication. I also tracked my diet, and the times of the day I began to get sick. I was able to chart all three things together.

It seemed that whenever I ate I would then feel sick 1-2 hours later. I showed this information to my doctor, and he referred me to an allergist. The allergist observed my health diary and was able to suggest that I might be allergic to soy, and not milk. This was the opposite of what we believed at the time. I tried each type of milk in a controlled environment, and discovered that I was, in fact, allergic to soy. My health diary really paid off.

download this page (pdf: 53K | doc: 80K | doc: en español)

Tips on Preparing for a Doctor’s Appointment

Kellie Haigh is 25 years old. She lives in Oxford, Iowa.

Going to a doctor’s appointment can be stressful. It helps me if I prepare for the doctor’s appointment before I go. Here are some tips on information that you need to get together before you go to the appointment.

  • Gather your insurance information. You need to bring your insurance card with you to your appointment. The receptionist will make a copy of this card. This card has information that tells the doctor’s office staff who is responsible for paying the bill for your appointment. Some people have more than one type of insurance. For example, you might have private health insurance and Medicare. If you have more than one type of insurance, knowing which health insurance is your “primary insurance,” the insurance the doctor’s office bills first, is important. Be sure and bring all of your insurance cards with you to the appointment.
  • Make a list of your medications. The doctor needs to know all of the medications that you are taking. Write down the name of the medication and the number of the milligrams that you take. Also, write down how often you take it. You can find all of this information on the medication bottle. It is also a good idea to write down the reason that you take the medication. This is helpful to the doctor because some medications are used to treat more than one condition. Also, be sure and include on your list any vitamins or herbal supplements that you take. 

  • Think about your health history. Take some time to think about your health history and what you need to tell the doctor about your health history. Have you had any major surgeries?  Have you been hospitalized?  Have you been treated for any other serious medical conditions?  Write down when these events happened so that it is easier to remember to tell the doctor. 
  • Think about your family’s health history. Doctors often ask about your family’s health history. Knowing your family’s health history will help the doctor treat you. This is because if someone in your family has an illness, then you may be at higher risk for it. If you are at higher risk, then the doctor can monitor, or check you over time, for that illness. It is much easier to think about this before you go to the appointment. Has anyone in your family had a major illness, such as cancer, diabetes, or heart disease?  It is okay if you do not know the answer to these questions. If possible, you might want to ask a parent or other relative if they know about your family’s health history. Be sure and write down what you find out, and bring it with you to the appointment.

You have prepared for the appointment, and now you are at the doctor’s office. Here are some tips about the information that you want to get from your doctor during the appointment.

  • Take notes during the appointment.  It is hard to remember everything that the doctor says, so it is important to write it down. Don’t be afraid to ask the doctor to stop for a moment so that you can take notes. 
  • Ask questions about prescriptions.  If the doctor suggests a new medication, ask questions about it. What is the prescription for?  How long does it take to start working?  How will you know when it is working?  Are there any side effects that you should know about?  How much of the medication are you supposed to take?  How often do you take it?  What does the doctor want you to do if you have a problem with the medication?  How much does the medication cost?  Will your insurance pay for the medication? Be sure and get all of your questions answered about the medication before you leave the doctor’s office.
  • Ask questions about tests.  If the doctor wants you to have a medical test, make sure that the doctor tells you all about it.  What is the test for?  What kind of information does the doctor think the test will provide?  Will your insurance pay for the test?  If the insurance will not pay for the test, how much will it cost?  What does it feel like to take the test?  Does it take a long time?  

You have the right to know these things before deciding whether or not to have the test.

  • Get copies of your medical records.  You have the right to get copies of your medical records if you want to read them. You will have to sign a release to get the records, and you will have to pay to have them copied. If you have questions about your records, then you can always ask for a copy.

Resources:  See “KASA Surviving a Doctor’s Appointment” and “KASA Keeping Track of Health Care Information,” both available on the KASA website.

Este documento en español.

download this page (pdf: 37K | doc: 87K | doc: en español)

Your Rights at the Doctor’s Office

Author Kellie Haigh is 25 years old. She lives in Oxford, Iowa.

Doctor appointments to manage your health care should be done in partnership with the doctor. Sometimes it can be hard to know what your rights are and how to advocate for those rights. Below are some of the rights that you have when you are at the doctor’s office.  

You have the right to privacy and confidentiality.  Under the law, your doctor cannot give anyone your healthcare information without your knowledge and permission. This includes your parents. Doctor’s offices will often use the terms “privacy” and “confidentiality” to explain their policies regarding keeping your information. This means that the doctor must keep your healthcare information secret from anyone else unless you give your permission in writing by signing a form for them to share it. There are a few exceptions to this law regarding privacy and confidentiality. If you tell your doctor that you are planning to hurt yourself or planning to hurt someone else, then the doctor is required by law to tell someone and get you help. Except in these situations, your doctor cannot share your healthcare information without your permission in writing, by signing a form. Signing a release form is a choice; you never have to sign a release form.

You have the right to bring someone with you to your appointment.   It is helpful to have someone with you at the appointment. This person can provide support for you during the appointment. They can also help you focus the conversation with the doctor. Also, the person can help you remember and take notes about what the doctor says.

You have the right to have the doctor explain what he/she is doing when he/she is examining or touching you.  When the doctor comes into the exam room, tell the doctor that you want to talk with him/her before they start doing the exam. It can be hard to talk to the doctor about your questions or concerns while they are doing the exam. Say that you want to talk before the exam starts. Use this time to talk to the doctor about your questions or concerns. Ask your doctor to tell you what they are going to do before they start the exam. You have the right to know what the doctor is going to do your body. Ask the doctor to explain what is happening during the exam. It is your body, and you have the right to have your questions about the exam answered, and you have the right to say “no” to an exam if you do not agree that it will be helpful. You also have the right to ask other people such as residents, researchers and medical students (anyone in the room besides your doctor) to leave the room at any time.

You have the right to ask questions and have them answered.   Your doctor is getting paid to work for you. The doctor is there to meet your needs and answer your questions, so speak up if you don’t understand something. This can include questions about things like treatments, tests or medications. You have the right to ask about risks and side affects of different treatment options and/or what to expect if you do not choose treatment. Don’t be afraid to ask the doctor to slow down or explain something further. That is the doctor’s job.  
It is important to ask this person to not talk to others about what the doctor said or how the appointment went. Remind them they are there to support you.

You have a right to age-appropriate exams.   This means that your doctor should be giving you the same exams as he would anyone else your age. Sometime doctors assume your life experience is different because you have a disability. Ask the doctor what exams they would be giving other people your age (physicals, gynecological exams, etc.).

You have the right to be treated with respect. If your doctor does not treat you with respect or you don’t like them, consider finding another doctor. You deserve to be treated with respect by your doctor.  

You have the right to decide not to follow the doctor’s advice or to get another opinion.  You are the one who has to live with the decisions related to your health care. It is okay if you decide to not follow your doctor’s advice. It is also okay to decide that you want to talk to another doctor to get a different opinion on the healthcare issue you are facing.

You have the right to a copy of your medical records.  This can be important for your information or to show other doctors the treatments and medications you have tried in the past. Note: Some doctors may charge a fee to make copies. 

Resources:
These two resources may not be the most youth-friendly, but they do include some good information:

Este documento en español.

download this page (pdf: 55K | doc: 83K)

How to Survive a Doctor’s Appointment

Kellie Haigh is 25 years old. She lives in Oxford, Iowa.

I have been a disabled girl for the past ten years (fibromyalgia and migraines), and over that time, I have seen hundreds of doctors. Because of my disability, I have had to learn how to deal with making and going to doctor’s appointments. Here are some of the things that I have learned along the way.

Step 1: Make the doctor’s appointment at a good time of the day for you.  Studies show that doctor’s offices are not as busy first thing in the morning and right after lunch. In planning for what will work best for you, you should make the appointment at the time of the day that you are most likely to feel your best. For example, I am not a morning person, so even if my doctor is less busy in the morning, I am not going to make my appointment then. You can ask the person who is making the appointment for a certain time of day, and they should tell you what is available.  Go when you are going to be at your best.

Step 2: Before the appointment, write down the reason for the visit or any questions that you have for the doctor.  Is this just a check-up appointment?  Then think about how you have been feeling before you go to the appointment so that you can tell the doctor. Do you have any questions about medications?  Are there any other problems that you are having?  Write these down before you go. It will be easier to remember everything that you want to talk about if you write it down.

Step 3: Do your homework.  I have learned that I often get the best care from my doctor if I do my own research before the appointment. For example, if I am having a certain problem, I will often learn about the possible treatment options before the appointment. I will learn about these options by going online or looking at the library. By knowing about various treatments, I can better talk to my doctor during the appointment. I can also ask my doctor about certain treatments. As the patient, you do not have to do this research before the appointment, but I have found that I get better medical care if I look into the treatment options before I talk to my doctor.

Step 4: If possible, bring someone with you to the appointment.  It is helpful to have someone with you at the appointment. This person can help you focus the conversation with the doctor. Also, the person can help you remember what the doctor says.
It is important to ask this person to not talk to others about what the doctor said or how the appointment went. Remind them they are there to support you.

Step 5: Know your info.  When you go to the appointment, you will have to fill out forms with your health history, medications, and insurance information. Make sure that you know all of this information, or write it down and bring it with you.

Step 6: When the doctor comes into the exam room, tell the doctor that you want to talk with him/her before they start doing the exam. It can be hard to talk to the doctor about your questions or concerns while they are doing the exam. Say that you want to talk before the exam starts.  Use this time to talk to the doctor about your questions or concerns that you wrote down and bought with you. Talking before the exam can also help make the exam more effective. This is because the doctor can know what to look for during the exam if you state your questions and concerns before the exam starts.

Step 7: Speak up if you have questions or don’t understand.  Your doctor is getting paid to work for you. The doctor is there to meet your needs and answer your questions, so make sure to speak up if you don’t understand something. Don’t be afraid to ask the doctor to slow down or explain something further. That’s the doctor’s job.

Step 8: Write down what your doctor says.  It is hard to remember everything that the doctor says, so it is important to write it down. Don’t be afraid to ask the doctor to stop for a moment so that you can take notes. Note taking is also a great job for the person who comes with you to the appointment.

Tips:
Remember that your doctor works for you. If your doctor does not treat you with respect or you don’t like them, consider finding another doctor. You deserve to be treated with respect by your doctor.   

You are probably going to have to wait for the doctor, so bring something to do. Bringing something to do makes waiting for your appointment with the doctor less frustrating. So bring something like a book, magazine, or music to listen to while you wait.

Best of luck to you at your next doctor’s appointment!

download this page (pdf: 47K | doc: 81K)

Switching to an Adult Doctor

Now that you have finally gotten used to your doctor, you have to pack up and leave because you have turned 21. Planning is the key to being happy with your new doctor. 

  • Start looking for a new doctor before you turn 21. This will keep you from rushing to find someone to take care of your health needs.
  • Make sure that you have your records sent to your new doctor.
  • Ask your doctor if he or she knows of an adult doctor who may be good for you.
  • When you have an adult doctor in mind, see if you can schedule a time to meet with him or her and ask questions.
  • Remember that you do have the right to privacy and can talk with your doctor alone if you need to.

 

download this page (pdf: 36K | doc: 93K)

My Basketball Team

by Eleanor Bailey

I have played on a Special Olympics basketball team for people with disabilities for four years. This year we started practice in January. We practice on Friday nights from 6:00 p.m. to 7:30 p.m. We have a regional tournament and a state tournament.

            Katie, Chloe, Missy, Chrissie, Holly and another girl are my teammates. Chris is my coaches. At practice, we work on dribbling and shooting hoops. We work on passing the ball. We practice dribbling around the coaches who are trying to defend us. We try to shoot over the coaches even though they try to steal the ball from us. We try to work as a team by passing the ball.

            I have become a better basketball player over the four years. In school I work on basketball in PE. I learned to bounce the ball with my fingertips and to keep the ball at a lower height near my hips. I learned how to do chest passes. I worked on passing skills and catching skills. Before, I couldn’t catch very well, but now I can catch the ball no matter where the ball is.

When I was younger, I couldn’t make baskets because I couldn’t get the ball up high enough and I didn’t stand close enough to the basket. But, now I am better at it. Now I shoot the ball higher. When I miss, the ball bounces off the rim but I am getting it up high enough. Sometimes the ball hits the rim, circles around the rim and then falls through the basket!

            My favorite part of my basketball team is making friends. I am comfortable playing with kids with disabilities and I can make friends with them. I enjoy my coaches. Getting exercise is also fun, too.

            Now I am looking forward to playing in the State Tournament.

Eleanor is a proud member of the KASA Youth Information, Training and Resource Center Task Force.

 

download this page (pdf: 163K | doc: 50K)

Indoor Wheelchair Soccer

by Christina Mills

As you may know, Indoor Wheelchair Soccer (IWS) is a national sport that is growing every year. It’s played just like “able-bodied” soccer, but has a few minor changes to it. For example, in IWS we play with tour hands instead of our feet. IWS used to be known as Wheelchair Handball, but in order for it to become recognized by the Paraolympics (Olympics for athletes with disabilities), they had to change the name.

Now for the important news. The annual IWS Nationals will be held in San Diego, CA this year from January 13th through the 16th. All spectators are welcome to come watch as 7 different teams will battle for the winner’s trophy. For the past 2 years the first place trophy has gone to the team from Houston, TX, but this year is sure to be different!

I will be competing on the San Diego YMCA Bullets team and we are sure to be the winners this year!

*If any of you are interested in knowing if there is a team near you or if you want to start a team, email me.

Stay tuned next month for the results of the Annual Indoor Wheelchair Soccer scores and the next phat sporting event of the month!

 

download this page (pdf: 177K | doc: 57K)

Welcome Sports Fans!

by Christina Mills

Greetings Club KASA members! My name is Christina Mills and I will be writing a sports column. The reason why I was chosen to write this column is because I have had my share of experiences with a variety of different wheelchair sports. To give you a brief history about myself, let me start by telling you that my disability is Osteogenisis Imperfecta–a bone disease. I am 22 years old and I live in San Diego, California.

As a child I can remember my Mom always having a hard time explaining why I couldn’t play on the playground with my peers, eventually we just stopped going there,” says Megan Brooks, a college student born with cerebral palsy.

When I was in seventh grade, I decided I wanted to join a swim team that my “able-bodied” friends were already a part of. I went to practice with them one day and the coach sort of looked at me strangely as I began to get into the water. At first, Julie, my coach, tried to stop me.

But she let me try it.

It was that day in seventh grade that changed my life. I swam with the “able-bodied”team known as the Swim Pals for 3 years and then continued on to the high school team when I entered the ninth grade. It was then again that the coach sort of looked at me strangely, but she gave me a chance to prove how much I adored the sport. During high school, I found out about an adaptive team and soon enough began swimming with them also. Swimming is where it all started, but it isn’t the only sport I have been successfully competing in.

I hope to entertain you all with stories of my sports life as well as other sports happenings going on across the country. If any of you have something you would like to ask me or if you have any sports you would like me to talk about, just let me know.

Thanks!

download this page (pdf: 224K | doc: 108K)

What is Vocational Rehabilitation?*

Vocational Rehabilitation agencies, often referred to as “VR”, are in every state. VR helps people with disabilities prepare and look for a job. VR was created out of the Rehabilitation Act of 1973. VR programs are run by state agencies. They are designed to help people with disabilities meet their career goals. They help people with disabilities get jobs, whether the person is born with a disability, develops a disability or becomes a person with a disability while working.

Vocational Rehabilitation Services [what they can help you with]

  • Eligibility Determination: Helps you to figure out if you can actually get the services
  • Assessment of vocational needs – Finds out about your interests, skill and services you may need
  • Development of your Individualized Plan for Employment – Outline of your goals and the services you need/will receive
  • Coordination of services – Helps in getting the services you need to reach your goals
  • Post-employment services – Helps you keep your job once you get it

Do you qualify for services from VR?

According to the federal government, if you are:

  • An “individual with a disability”, meaning a person who
    • Has a physical or mental disability that is a sizable (big) obstacle (block) to getting a job
    • o Can benefit from VR services to get a job
  • An individual who needs VR services to prepare for, get or keep a job
  • If you receive Supplemental Security Income (SSI) and/or Social Security Disability Insurance (SSDI) benefits, you can receive VR services.

Vocational Rehabilitation services may be different from state to state. To find your state VR, see this website, www.jan.wvu.edu/SBSES/VOCREHAB.HTM. You can find your state and click on it for information about how to get in touch with them to find out more.

*Translated from “Getting the Most from the Public Vocational Rehabilitation System”, by Colleen Condon, Cecilia Gandolfo, Lora Brugnaro, Cindy Thomas and Pauline Donnelly for the Institute for Community Inclusion


download this page (pdf: 47K | doc: 102K | doc: en español)

Getting a Job: Building Your Interview Skills

Filling out a job application and creating a resume are only two parts to getting a job. Another important part is how you interview. People with disabilities communicate in many different ways, but it all means the same at the end. Some may have limited verbal communication, but may use a speech board, an interpreter, or another form of communication. Making a good impression during a job interview doesn’t only include how you answer questions. Here are some other ways to shine during the job interview process.

  • Come Prepared
    Coming prepared to a job interview includes bringing a copy of your resume and the names and contact information for two or three references. References are people who you feel would give positive information about you and have known you for two or more years. Your list should include people who are not related to you, like a past co-worker, a friend’s parents, a school advisor or a community leader. You should also try to learn as much as you can about the place you are applying before the interview. Looking online at their website or reading brochures, etc. can help you know how your skills could be helpful to them.
  • Be On Time
    It’s better to be early than late. If the interview is at a place that you are unsure of, give yourself plenty of extra time to get there. If you are arranging a ride on paratransit or through a friend, make sure to plan your trip in advance. Do your “homework.” Find out how many miles it is away from your home, and think about whether or not you’ll be traveling during high traffic hours. The last thing you want to do at an interview is explain why you were late. Getting to the interview on time leaves the impression that you are punctual and dependable.
  • Dress Appropriately and Be Well Groomed
    The way you look at an interview is the way you will be remembered. Dress the part. Wearing a button-down, collared shirt or a dressy sweater with nice pants or a skirt and dress shoes is preferable. If you are going to interview for a ‘high level’ or professional job, wearing a suit may be more appropriate. Avoid clothes that may be more memorable than what you say. You do not want the person interviewing you to be so distracted by your outfit or hairstyle that they cannot hear what you are talking about. Stay away from clothing with flashy colors and slogans. Neatly brushing your hair, maintaining fresh breath, and having clean hands are also important. If you are a manual wheelchair user, you may want to have some hand wipes nearby to clean your hands before you go into the interview. And NO gum chewing!
  • Ask Questions as Needed
    If you have done your research before the interview, you may have questions about the tasks you will be expected to perform, expectations of the job or even the benefits. There should be time during the interview, usually near the end, where you can ask these questions.

It’s common to feel nervous and anxious during an interview.  Know your rights in an interview. There are questions that are illegal for employers to ask, including questions about your disability, your marital status, your age (unless there is an age requirement for the job, then they can ask you if you are over a certain age), or if you have children.

An employer can ask if you will be able to do a job with reasonable accommodations. Reasonable accommodations mean that you can do the job using some adaptations or piece of equipment (assistive technology). For example, using a speech recognition program to type documents on a computer or using a stool to sit behind a counter instead of standing. You should let the employer know that you can do the job with reasonable accommodations if they ask but then talk in detail about it after you are hired.

After the interview, it is good manners to send a thank you note to each person that interviewed you. The note does not need to be lengthy but should acknowledge that someone took the time to talk with you and should remind him or her that you are interested and available to answer any more questions. This can also go a long way to helping your resume float to the top of the pile!

Esta página en español.

descargue esta página (pdf: 47K | doc: 102K)

Para obtener un trabajo:  Cómo mejorar las destrezas necesarias para una entrevista


Llenar un formulario de solicitud de empleo y redactar un currículum vitae son tan solo dos de las etapas necesarias para obtener un trabajo. Otra parte importante es la entrevista. Las personas con discapacidades se comunican de muchas maneras diferentes, pero todo es lo mismo al final. Algunos pueden tener una comunicación verbal limitada, pero pueden usar un tablero de producción de habla, un intérprete u otra forma de comunicación. La manera en que se responden las preguntas no es lo única forma de causar una buena impresión durante la entrevista para un trabajo. Aquí encontrarás sugerencias para que te destaques durante el proceso de la entrevista.

  • Ir preparado

Ir preparado a una entrevista para un empleo incluye llevar una copia de tu currículum vitae y los nombres e información para contactar a dos o tres referencias. Las referencias son las personas que están dispuestas a dar información positiva acerca de ti y que te conocen desde al menos dos años. Tu lista debería incluir a personas que no sean tus familiares, tales como un compañero de trabajo previo, los padres de un amigo, un orientador de la escuela o un líder de la comunidad. Además, antes de la entrevista deberías tratar de informarte lo más posible acerca del lugar donde estás solicitando el trabajo. Puedes buscar en el sitio Web de dicho lugar o leer sus folletos para saber de qué manera tus destrezas podrían ser útiles para ellos.

  • Llegar puntualmente

Es mejor llegar adelantado que tarde. Si la entrevista se va a llevar a cabo en un lugar que no conoces, calcula tiempo adicional  para llegar. Si estás consiguiendo transporte a través de un servicio de transporte público o con algún amigo, asegúrate de planear tu viaje con anticipación. Investiga por tu cuenta. Calcula a cuántas millas de tu hogar se encuentra el lugar de la entrevista y piensa si vas a ir durante las horas de mayor tráfico o no. Lo que menos quieres en una entrevista es tener que explicar por qué llegaste tarde. Llegar a la entrevista a la hora da la impresión de que eres puntual y confiable.

  • Ir limpio y bien vestido

Te recordarán de la manera en que te vieron durante la entrevista. Vístete apropiadamente. Es preferible llevar una camisa con cuello o un suéter más formal con unos buenos pantalones o una falda y zapatos de vestir. Si vas a una entrevista para un trabajo de ‘alto nivel’ o un trabajo profesional, sería más apropiado vestir un traje. No es bueno que te recuerden más por la ropa que llevas que por lo que has dicho. Tú no quieres que la persona que te está entrevistando se distraiga con tu ropa o con tu peinado y que no pueda poner atención a lo que estás diciendo. Mantente alejado de la ropa de colores muy llamativos o con consignas. También es importante que cepilles tu cabello cuidadosamente, que mantengas un aliento fresco y las manos limpias. Si utilizas una silla de ruedas manual, quizás desees llevar toallitas de papel húmedas para limpiarte las manos antes de la entrevista. ¡Y OLVÍDATE de la goma de mascar!

  • Formular las preguntas necesarias

Si has llevado a cabo tus investigaciones antes de la entrevista, es posible que tengas preguntas acerca del trabajo que se espera que realices, de las expectativas e incluso de los beneficios. Debería haber tiempo durante la entrevista, generalmente cerca del final, para que formules estas preguntas.

Es común sentirse nervioso y ansioso durante una entrevista. Tienes que saber cuáles son tus derechos en una entrevista. Es ilícito que los empleadores hagan algún tipo de preguntas, incluso preguntas acerca de tu discapacidad, estado civil, edad (a menos que exista un requisito de edad para el empleo, en ese caso pueden preguntar si eres mayor de cierta edad) o si tienes hijos.

Un empleador puede preguntar si vas a ser capaz de realizar un trabajo con adaptaciones razonables. Adaptaciones razonables significa que puedes realizar el trabajo utilizando algunas adaptaciones o equipos (tecnología auxiliar). Por ejemplo, usar un programa de reconocimiento de habla para escribir documentos en una computadora o usar un taburete para sentarte detrás de un mostrador en vez de permanecer de pie. Tú deberías comunicarle al empleador que puedes realizar el trabajo con adaptaciones razonables si es que te preguntan, pero debes hablar con detalles acerca de eso cuando te hayan contratado.

Después de la entrevista, es signo de buena educación enviar una tarjeta de agradecimiento a todas las personas que te entrevistaron. La tarjeta no necesita ser larga pero debe agradecer a la persona que dedicó su tiempo a hablar contigo y debe recordarle que tu estás interesado en el trabajo y que te encuentras disponible para responder cualquier pregunta adicional. ¡Esto puede ayudar mucho a que tu currículum vitae pase a un lugar más visible, sobre los demás que se encuentran apilados en un escritorio!

download this page (pdf: 46K | doc: 80K)

Para obtener un trabajo:  Referencias profesionales y personales

Cuando se está solicitando un trabajo, es importante tener referencias personales y profesionales. Las referencias son las personas que pueden hablar de tus destrezas y de la experiencia en el trabajo, son personas que en tu opinión te conocen bien y que estarían dispuestas a hablar de tus cualidades en el trabajo o en general. Si ya has enviado una solicitud para un empleo y estás listo para una entrevista, deberías preparar una lista de referencias profesionales y/o personales.

Muchos empleadores piden referencias, ya sea separadamente o en la misma solicitud de empleo, durante o después de la entrevista. A veces no piden referencias hasta después de citarte para una segunda entrevista. Así es, algunos empleadores no te entrevistarán una vez sino dos para asegurarse de que han seleccionado a la persona correcta para el trabajo. Para que puedas tener tu hoja de referencias lista para ser presentada, primero debes preguntarles a las personas de tu lista si estarían dispuestas a decir algo positivo acerca de ti.   Estos son algunos de los pasos que debes seguir al comienzo:

  • Contacta de 3 a 5 personas con las que hayas trabajado o realizado trabajo en calidad de voluntario y que conozcas por lo menos desde hace dos años. También puedes incluir a un consejero de la escuela, a un maestro, etc.
  • En la lista anota el nombre completo de la persona, el título que tiene en su empleo, la dirección y el número de teléfono. También puedes incluir la dirección electrónica. Asegúrate de que la información esté actualizada.
  • Especifica si tus contactos son referencias profesionales o personales.
  • Quizás puedes mencionar desde cuándo conoces a la persona.
  • Adjunta la hoja de referencias a tu currículum vitae y llévalo a la entrevista. Esto demostrará que has ido preparado.

Asegúrate de avisarles a las personas de tu lista de referencias que has proporcionado esta información personal. De esta manera, ellos estarán preparados cuando reciban la llamada y sabrán a que puesto estás postulando. Si tú piensas que las personas de tu lista de referencias deberían saber algo específico acerca del puesto que estás solicitando, asegúrate de comunicárselos. Por ejemplo, si estás solicitando un empleo donde tendrás que enseñar, puedes sugerirle a tu referencia que hable de lo bien que te desempeñas cuando trabajas con niños o acerca tu experiencia enseñando o capacitando a otras personas. Y por último, pero no por eso menos importante, asegúrate de comunicarles a las personas de tu lista de referencias que les agradeces toda su ayuda y avísales si conseguiste o no el trabajo. ¡Buena suerte!    

 

download this page (pdf: 224K | doc: 108K)

What is Vocational Rehabilitation?*

Vocational Rehabilitation agencies, often referred to as “VR”, are in every state. VR helps people with disabilities prepare and look for a job. VR was created out of the Rehabilitation Act of 1973. VR programs are run by state agencies. They are designed to help people with disabilities meet their career goals. They help people with disabilities get jobs, whether the person is born with a disability, develops a disability or becomes a person with a disability while working.

Vocational Rehabilitation Services [what they can help you with]

  • Eligibility Determination: Helps you to figure out if you can actually get the services
  • Assessment of vocational needs – Finds out about your interests, skill and services you may need
  • Development of your Individualized Plan for Employment – Outline of your goals and the services you need/will receive
  • Coordination of services – Helps in getting the services you need to reach your goals
  • Post-employment services – Helps you keep your job once you get it

Do you qualify for services from VR?

According to the federal government, if you are:

  • An “individual with a disability”, meaning a person who
    • Has a physical or mental disability that is a sizable (big) obstacle (block) to getting a job
    • Can benefit from VR services to get a job
  • An individual who needs VR services to prepare for, get or keep a job
  • If you receive Supplemental Security Income (SSI) and/or Social Security Disability Insurance (SSDI) benefits, you can receive VR services.

Vocational Rehabilitation services may be different from state to state. To find your state VR, see this website, www.jan.wvu.edu/SBSES/VOCREHAB.HTM. You can find your state and click on it for information about how to get in touch with them to find out more.

*Translated from “Getting the Most from the Public Vocational Rehabilitation System”, by Colleen Condon, Cecilia Gandolfo, Lora Brugnaro, Cindy Thomas and Pauline Donnelly for the Institute for Community Inclusion

Need to Pass a Drug Test?
Toxin Rid 10 Day Detox Program
Aloe Toxin Rid Shampoo + Zydot Ultra CleanMega Clean + PreCleanse Pills
Powdered Human Urine
toxin rid cannabis detox kit
Aloe toxin rid and zydot ultra clean
MegaClean THC detox drink
Powdered Urine Kit
$189.95 $209.99$235.90$69.95$43.95
More information
More information
More information
More information

Comments0

Leave a Reply