Every Student Succeeds Act (ESSA): Transition begins with this ...

The reauthorization of the Elementary and Secondary Education Act (ESEA), formerly known as the No Child Left Behind Act (NCLB), was completed when the President signed the Every Student Succeeds Act (ESSA) into law on December 10, 2015. The law has been around under different names, since 1965. Its main purpose is as a civil rights law, to address the need for equal opportunities in education for all students, including students with disabilities. Full implementation of the new law will occur in the 2017-2018 school year with 2016-2017 serving as a transition year. With the passage of ESSA, all NCLB waivers will cease to exist on Aug. 1, 2016 and the new law will begin.

The new ESSA law attempts to address some of the problem areas in NCLB and provides new provisions for things such as revised alternate assessments, enhanced implementation of Universal Design for Learning (UDL) and provides language to improve school climate and restrict the use restraint and seclusion techniques in schools.

Revised Alternate Assessments The requirement under ESSA is that students who participate in the state

alternate assessment receive instruction based upon grade academic content, and that students cannot be put into an alternate assessment without first having received such instruction. ESSA also requires that alternate assessments be based on the state’s challenging academic content standards for all students.

ESSA requires that states promote involvement and progress in the general education curriculum for all students, including those who

take an alternate assessment.

Universal Design for Learning (UDL) for all content areasESSA includes UDL in its definition of comprehensive literacy instruction. Universal Design for Learning is a set of principles for curriculum development that give all individuals equal opportunities to learn. ESSA requires comprehensive literacy instruction to be implemented across all content areas. (It doesn’t make sense to implement UDL solely in reading or English-Language Arts). Visit the National Center on Universal Design at CAST www.udlcenter.org.

Every Student Succeeds Act (ESSA): Transition begins with this school year!(English, Español, Português)

From the Executive Director:Transition: It’s all about expectations, I guess!

Education Department Releases Guidance on Rightsof Students with ADHD

Top Ten Ways to Be Active in Your Child’s School

Planning For Emergencies

Gala 2016 – Celebrating Every Child: A Lucky Night for All!

Plan Now to “Walk, Roll, Shobble, Stroll*” with us in September!

Trauma and Learning Through the Director’s Lens: Paper Tigers

Fetal Alcohol Spectrum Disorder: A Developmental Disability

Book Reviews: My Heart Can’t Even Believe It - A Story of Science, Love, and Down syndrome

And More...

I N F O R M I N G , E D U C A T I N G , E M P O W E R I N G F A M I L I E S

SUMMER 2016

IN THIS ISSUE

4

7

3

1

FEDERATION FOR CHILDRENWITH SPECIAL NEEDS

8

15

6

Every Student Succeeds Act (ESSA): Transition begins with this school year!

Continues on page 5

11

9

12

Register Now for Walk, Roll, Shobble, Stroll The Federation’s 4th Annual

Fundraising Walk

(For more information see page 9)

Federation For Children with SpeCial needS

2

N E W S L I N E VOLUME 36, NUMBER 4

Editor-in-Chief:Richard J. Robison

Production Manager:John Sullivan

Layout & Design:Sonya Fort

Advertising:Wanda Morton

Newsline is a quarterly publication of the Federation for Children with Special Needs, Inc. 529 Main Street, Suite 1M3, Boston, MA 02129

Newsline is supported in part by grants from the U.S. Department of Education. The views and opinions herein do not nec-essarily reflect views or policies of the U.S. Department of Education, or of the Feder-ation for Children with Special Needs. Ads herein do not constitute endorsement by the Federation for products, services, or organizations.

Newsline and its contents are copyrighted by the Federation for Children with Spe-cial Needs; some material may carry other copyrights as well (noted where appropri-ate). Permission is granted to quote from us at length, while giving credit to Newsline, a publication of The Federation for Children with Special Needs (and original author, if appropriate).

Newsline’s mailing list may occasional-ly be made available to organizations in which we believe our readers may have interest. If you wish your name to be with-held, please call or write the Federation’s Boston office to inform us.

The Federation for Children with Special Needs

Our Mission:To provide information, support, and as-sistance to parents of children with dis-abilities, their professional partners, and their communities. We are committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities.

Board of Directors:Anne Howard, PresidentMichael Weiner, TreasurerPatricia Schram, Clerk Susan Arndt, Philomena Asante, Nicole Baumer, Dan Heffernan, Melanie Perkins McLaughlin, Joseph Petner, Teresita Ramos John Reichenbach, Leo Rotman James Whalen

Director Emeritus: William Henderson

Soy el Presidente y fundador de una organización sin fines de lucro que ayuda a educar a los padres que tienen niños autistas. Yo soy la primera organización bilingüe y mi enfoque principal es ayudar a la población Latina a comprender la importancia de la intervención temprana. 1 clientes de los 68 niños son diag-nosticados con autismo en el Latino población 1 de 93, los niños de las minorías, los niños están siendo diagnostican yearls de 5 a 7 más adelante que más niños debido a la falta de educación y recursos para las comunidades minoritarias. Mi objetivo es cambiar la dinámica y llegar a tantas comunidades de minoría

como pueda, los medios de comunicación son una forma de llegar. Yo también soy una profesional, con 20 años de experiencia en investigación clínica, que trabajo como consul-tor de empresas de biotecnología que empezamos autismo genios del mundo después de notar que la población bilingüe luchaba con recursos y educación sobre el autismo, aunque hay muchas organizaciones que brindan apoyo a familias en necesidad es una carencia de material de marketing y educación que no está a la población Latina de la biotecnología.

Esteban Barriga; él es mi hijo autista de 19 año de edad que fue diagnosticado a los 2 años con autismo. Me dijeron acabaría en una institución, actualmente Esteban participa en el programa de habilidades de vida en Maynard MA. Se convirtió en una celebridad de Nueva Inglaterra hace dos años cuando produjo con apoyo de los demás un video pidien-do Ellen Degeneres a su fiesta. Ver www.huffingtonpost.com/2014/02/04/esteban-barri-ga_n_4724602.html video su historia se convirtió en viral en dos días. Si buscas en google Esteban Barriga ver todas las publicaciones sobre él.

AGW autismo genios del mundo es nuestra organización sin fines de lucro que fue fundada por Esteban y básicamente llegar a muchas familias que luchan con la carencia de servicios e información sobre el autismo. www.Facebook.com/AutismGeniuses?_rdr=p tenemos más de 18.900 internacional y US seguidores en facebook. Creo que nuestra historia sería muy inspirador compartir.

AGW - Autismo Genios del Mundo Por Maribel Rueda, AGW

SUMMER 2016

3

From the Executive Director:Transition: It’s all about expectations, I guess!It’s been sometime since I told a story about my daughter Amy. She is the adult with Down syndrome who has taught me the most about growing up with a disability. Amy has this amazing way of navigating through life with little concern or worry about many of the things most of us find troubling.

Recently, Amy was at a medical appoint-ment at one of the large Boston hospitals for a routine check-up. Amy, who is in-credibly social, struck up a conversation with her medical provider that resulted in an invitation. The doctor, who has been seeing her for a few years, has built a nice relationship between the two of them. Her inquiry was about Amy’s ac-tivity at home and work and how things were going.

In the course of the conversation, the doctor mentioned to Amy that their clinic was soon to recruit volunteers who are individuals with disabilities to work at the program. In par-ticular, she wondered if Amy might like to become a “Greet-er” for the program, which would include assisting families while they wait for their appointments.

Amy already has a part time paid job as a Bakery Assistant in a grocery store near our home. When the doctor spoke to her about this new opportunity, Amy responded immediate-ly. You mean I would need to come to Boston? And this is a volunteer job - which means not being paid? Of course, the answer to both questions was Yes! Without hesitation, Amy replied, “I don’t think so. I already have a job. I get paid and it is close to home. Why would I want to have a job like this?”

Her point was well made. The doc-tor, of course, was trying to be en-couraging and affirm Amy’s gifts of social discourse. She saw that she would be an asset and probably en-joy the opportunity. Amy was a lit-tle more practical and to the point. People with disabilities deserve the opportunity to be productive, con-tributing members of their commu-nities and affirmed by being paid for the services they render.

Transition for students is designed to as-sist students to obtain competitive inte-grated employment, post-secondary ed-ucation or independent living. Students engaging in self-determination and ac-tively advocating for themselves are the goals we have set for our students and community. Amy reminded me of those goals through her own appropriate sense of empowerment and natural ability to speak on behalf of her own interests.

Amy has developed high expectations for herself and the confidence to pull it off! I am still learning from her after all these years.

The Federation seeks to empower parents, family mem-bers and individuals with disabilities to embrace the Tran-sition and achieve full self-determination for their lives. Without thinking about it – Amy teaches me that it can and does happen.

Rich Robison

Rich Robison

“I don’t think so. I already have a job. I get paid and

it is close to home. Why would I want to have

a job like this?”- Amy Robison

MLK Summer Interns at the FederationThis summer the Federation was again pleased to be a non-profit partner in John Han-cock’s Martin Luther King Summer Scholars Program. With over 600 youth participating annually, MLK Summer Scholars is the largest, most comprehensive, corporate summer jobs program of its kind in the country.This year we welcomed Kayleigh Bernadeau and Jason Weng to work in our Boston office. Kayleigh is entering her senior year of high school and provided administrative

support to the office including covering the front desk and working on special assignments for our Parent Training and Information Center and the Family TIES of Massachusetts projects. Kayleigh shared, “I plan on majoring in Applied Psychology with a minor in Deaf Studies or American Sign Language when I move on to college. I hope to become a School Psychologist or Social Worker.”Jason is also beginning his senior year of high school. He helped out the technology team, worked on restoring, con-figuring and recycling hardware, captioning archived videos and provided technical support to staff as needed. Jason is “looking forward to going to college and pursuing my passion in computer science and game design.” The Federa-tion wishes both of these outstanding young people great success in their futures and thanks them for their commit-ment as this year’s MLK Summer Scholars!


4

On July 26, 2016, the U.S. Department of Education Office for Civil Rights issued guidance clarifying the obliga-tion of schools to provide students with attention deficit hyperactivity disorder (ADHD) with equal educational rights under Section 504 of the Rehabilitation Act of 1973. Section 504 requires schools to provide a free appropri-ate public education(FAPE) to each qualified student with a disability. Visit Disability.gov to learn more about the rights of students with disabilities. The Following is a letter written by Catherine E. Lhamon, Assistant Secretary for Civil Rights:

“I write this letter to clarify and provide guidance on the Federal obligations of school districts that receive Federal financial assistance from the U.S. Department of Education (the Department) to students with attention-deficit/hyperactivity disorder (ADHD)1 under Section 504 of the Rehabilitation Act of 1973 (Section 504) and the Department’s implementing regulations. This Federal law prohib-its discrimination on the basis of disability and requires school districts to provide an equal educational opportunity to students with disabilities. Because the Americans with Disabilities Act Amendments Act (Amendments Act) clarified the broad scope and definition of the term “disability,” more students with ADHD are now clearly entitled to the protections under Section 504.

Over the past five fiscal years (2011-2015), the Department’s Office for Civil Rights (OCR) has received more than 16,000 complaints alleging discrimination on the basis of disability in elementary and secondary education programs. Approximately 2,000, or one in nine, of these complaints involved allegations of discrimination against a student with ADHD. In resolving such complaints, OCR has found that many teachers and administrators often take appropriate action to ensure that students with ADHD receive the pro-tections to which they are entitled under Federal law, but many others are not familiar with this disorder, or how it could impact a student’s equal access to a school district’s program.

Through our enforcement efforts, we have learned that many students with ADHD are still experiencing academic and behavioral challenges in the educational setting, and that policy guidance is needed to ensure that those students are receiving a free appropriate public education (FAPE) as defined in the Department’s regulations implementing Section 504. OCR investigations have revealed that students with ADHD could be denied FAPE because of problems that school districts have in identifying and evaluating students who need special education or related services because of ADHD.

Some of these problems are as follows:

• students never being referred for, or identified by the school district as needing, an evaluation to determine whether the student has a disability and needs special education or related services;

• students not being evaluated in a timely manner once identified as needing an evaluation; or

• school districts conducting inadequate evaluations of students. In addition, even if properly identified, a student with ADHD who is determined to have a disability may not always receive required services.

OCR, through its enforcement efforts, has observed that school districts fail to meet their Section 504 obligations when they:

• make inappropriate decisions about the regular or special education, related aids and services, or supplementary aids and ser-vices the student needs, and the appropriate setting in which to receive those services based on a misunderstanding of ADHD and the requirements of Section 504; fail to distribute relevant documentation to appropriate staff; or

• consider inappropriate administrative and financial burdens in selecting and providing appropriate related aids and services. The failure to provide needed services to students with disabilities can result in serious social, emotional, and educational harm to the students involved. It can also unnecessarily drain school district and family resources if the school is ineffectually attempting to meet the needs of students with disabilities through failed interventions or disciplinary consequences.

As outlined in the Department’s regulations implementing Section 504, school districts must conduct individualized evaluations of students who, because of disability, including ADHD, need or are believed to need special education or related services, and must ensure that qualified students with disabilities receive appropriate services that are based on specific needs, not cost, and not based on stereotypes or generalized misunderstanding of a disability.

Education Department Releases Guidance on Rights of Students with ADHD

Continues next page

SUMMER 2016

5

The Federation Collaborates with Eastern Bank

Federation Executive Director Rich Robison and Outreach Team Leader Oanh Bui accept a check from Eastern Bank’s Jim Baglieri. We are so pleased to have received this funding from Eastern Bank through their Strengthening Families Targeted Grant Program. This grant will help us provide support, information and training to underserved families of children with special needs. Thank you to all at Eastern Bank!

Every Student Succeeds Act (ESSA): Transition begins with this school year! (continued from page 1) Improved School Climate ESSA may require schools to accept technical assistance on best practices for improving school climate and safety. This can include eliminating bullying, addressing the inappro-priate and dangerous use of restraints and seclusion, and increasing the number of students with disabilities who are educated in the general education classroom.

ESSA changes can support IEPsMany of the changes in the new ESSA will assist parents at Individualized Education Program (IEP) meetings to raise academic expectations and strengthen school services for students with disabilities.

Meaningful Stakeholder Consultation ESSA requires each state to create implementation plans that are to be developed in consultation with stakehold-ers, including parents. Decisions will be made at the state and local levels by the 2017-18 school year regarding the details of the requirements of school accountability for the academic performance of students with disabilities. Con-tact the MA Department of Elementary and Secondary Ed-ucation to learn more about opportunities for involvement. Visit www.doe.mass.edu and search for ESSA.

Schools Are Accountable for Students with DisabilitiesESSA requires that a minimum of 95% of all students (in-

cluding students with disabilities) participate in the state as-sessment system (MCAS). It is important to understand that the 95% participation rule in ESSA is applied to all students at each school and each student subgroup. In other words, if students in one subgroup are not assessed, even if the rule is met for the other subgroups, the school may be in violation.

ESSA also requires the reporting of student scores for any subgroup with over 30 students. Some advocates are con-cerned that may be too large a number and result in too many schools becoming exempt from reporting if they have too few students. Therefore, some have recommended that the number be lowered to an “n” size of 10.

Finally ESSA requires that data is reported for every student subgroup listed in the law, without eliminating or combining any student subgroups. This means the current Massachu-setts category of “high needs students” may need to be sepa-rated into different groups of students.

More resources: As the implementation of ESSA moves for-ward, greater details will become available, as well as tips for families on how to advocate for their children in school settings.

In the meantime, visit www.advocacyinstitute.org/ESSA/index.shtml for additional information

Education Department Releases Guidance on Rights of Students with ADHD (continued from previous page) These and other Section 504 obligations apply to all students with disabilities and are discussed in this guidance as they specifically pertain to students with ADHD. Through this let-ter and the accompanying Resource Guide, OCR seeks to help educators, families, students, and other stakeholders better understand these laws as they pertain to students with ADHD in elementary and secondary schools in order to ensure that these students receive the regular or special education, related aids and services, or supplementary aids and services the stu-dent needs to be successful.

I encourage you to use this information to ensure that your school district is properly evaluating and providing timely and appropriate services to students with ADHD.

Sincerely,

Catherine E. Lhamon Assistant Secretary for Civil Rights


6

As a parent, you play a key role in your child’s education – you can help give them the best chance at success in learning by setting high expectations, making sure your child attends school every day, talking with your child about what they are learning and encouraging your child to complete homework and assignments. Maybe you can do more.

“When schools, families, and community groups work together to support learning, children tend to do better in school, stay in

school longer, and like school more.”

From A New Wave of Evidence: The Impact of School, Family, and Community Connections on Student Achievement, Hen-derson and Mapp - a report from Southwest Educational Development Laboratory (2002).

Research shows that when a family is involved with their child’s school, students do better and it is a strong factor in school performance. All families want what is best for their children and families can be a valuable resource for teachers. So take the steps this year to become more involved with your child’s school, everyone will benefit – even you!

All of the following activities begin with a verb – take action to learn more and help direct the future!

1. Join your school district PTA/PTO and SEPAC – be an ac-tive member

2. Attend school meetings/parent conferences/open houses

3. Get to know your child’s teacher – schedule a conference, write a note/email

4. Volunteer – even one day/one time, share your talents, be a Guest Speaker

5. Ask for details about school programs, activities, sports, clubs

6. Mentor a new parent or tutor a student

7. Organize a school activity or fund raising event

8. Chaperone a field trip or become a playground monitor

9. Organize an after-school club or interest group

10. Run for School Committee/School Site Council

For some additional resources, see Family Engagement in Every School for Every Child: www.fcsn.org/family-engage-ment-in-every-school-for-every-child

Top Ten Ways to Be Active in Your Child’s SchoolBy Leslie M. Leslie, MassPAC Director

SUMMER 2016

7

Resources for Families

Life is full of unexpected occurrences. Emergencies may oc-cur at any time. Parents of children with special needs have long list of potential concerns and supportive steps that can be taken to address their worries. In times of emergency, the likelihood of performing well under stress can be improved if parents spend some time planning for emergencies, before they happen. Lessen the effects of these situations on your family – through emergency preparedness.

What kinds of emergency can you plan for? After last win-ter, think of natural disasters such as weather-related prob-lems: a power outage or damage due to heavy snow, ice, or rain storms. Man-made disasters may include a house fire or gas leak in the neighborhood. Unexpected mishaps, seeming-ly smaller issues in scale, could include when the school bus arrives before Mom, or situations that risk health and safety, like running out of medical supplies during a bad storm.

Family TIES and the Mass. Department of Public Health (MDPH) help families to plan ahead so that in times of emer-gencies, children’s special health care needs will be addressed. There are three basic steps to follow: (1) Make a Plan and address the types of emergencies that may affect your family and child. Take into account your child’s diagnoses, including medical, behavioral, and emo-tional needs. Review, update, and practice your Plan with your family periodically.

(2) Make a Kit to address basic needs for your entire family. This includes emergency information, prescriptions and med-ications, and first aid and medical supplies. Prepare weath-er-tight containers with 3 days of nonperishable food, drinking

water, and emergency items such as flashlights, and a portable radio for times when you must “shelter in place.” For emergency evacuations, prepare another contain-er with copies of import-ant documents (medical information and doctors list, insurance contacts, banking information, a list of family and friends), a small supply of cash in case banks are closed, and an extra set of house and car keys. (3) Share Your Plans with family members and those who can assist in times of emergency, including neighbors and caretakers. Communication and support are critical steps in your planning process. Become familiar with emergency re-sponders and contacts in your community.

To raise awareness of your child’s special needs, complete the Disability Indicator Form. This voluntary program informs the Emergency Management Director (EMD) for your community that your family is more likely than most families to need special assistance due to special health care concerns. The program is free and effective. Download the Form and contact information for your EMD from the Family TIES website: www.massfamilyties.org/info/ep.php. Do it today, for your peace of mind.

For more information, please call Family TIES at 800-905-TIES (8437) and learn more about resources from the Mass. Emergency Management Agency and Mass. Department of Public Health Office of Preparedness and Emergency Management: www.mass.gov/ready.

Planning For EmergenciesBy Mary Castro Summers, Project Director, Family TIES of Massachusetts (FCSN)

Exceptional Lives has launched a new version of its free on-line Guides designed for parents of children or adult fami-ly members with disabilities. The Guides help parents and caregivers walk through complex processes such as how to:• Access special education• Create an effective IEP• Optimize your health insurance• Explore guardianship and its alternatives• Apply for SSI

The Guides are written in plain language and focused on ac-tion steps. Each Guide asks a parent simple questions about their family’s situation, then uses their answers to display in-formation that is current and relevant to them.

All Guide content is gathered from expert sources, includ-ing the Federation for Children with Special Needs. The new

version, driven by parent feedback, includes features such as interactive checklists, new graphics, and a My Files button that shows all forms in each Guide in one place.

“After using an Exceptional Lives Guide, I know which ser-vices we can be getting, and how to get them!” said Natalie Se-quea of Boston. “These Guides bring all the information you need in one place. They show you where you need to start, and where you need to go. They’re very easy to use. Excep-tional Lives has the most parent-friendly site I’ve ever seen. By creating this platform, you give parents like me hope.”

Parents can access the free Guides at any time through any computer, tablet or smartphone connected to the Inter-net. Those who have a question while using the Guides can get free phone or online support from Exceptional Lives’ professional staff. Exceptional Lives can be found at www.exceptionallives.org.


8

Gala 2016 – Celebrating Every Child: A Lucky Night for All!Friday the 13th might scare off some folks, with thoughts of bad-luck and superstition. But for the Federation, Friday, May 13th was a night of luck, good times and good friends as we celebrated Gala 2016 – Celebrating Every Child!

Horseshoes, ladybugs, lucky pennies, keys, elephants and four-leaf clovers were just some of the many “luck” themed decorations that greeted guests at Boston’s Westin Waterfront Hotel. In keeping with the theme, guests started out their eve-ning bidding on some wonderful items in categories such as “It’s Your Lucky Day”, “Lucky Little Ones”, “Luck Be a Lady” and “Winning Streak” during the silent auction and reception that preceded dinner and the evening’s program. This year’s auction featured an exciting Diamond Earring GiveAway! Cocktail entertainment was provided during the reception by the Longwood Symphony Orchestra Chamber Players.

Guests entered the ballroom at 7:30pm, where they were wel-comed by the Federation’s Exec-utive Director Rich Robison and former WCVB news anchor Susan Wornick who served as Master of Ceremonies for the third year in a row. This year, Wornick had help in her emcee duties, and was ably assisted by co-host Amy Robison.

Before dinner, guests were treat-ed to a performance by the D’Ja View Chorus, from Riverview School who performed an origi-nal piece “It’s Time To Move On” written by one of the students about the Riverview journey, and Fleetwood Mac’s “Don’t Stop Thinking About tomorrow!”

Following dinner, Federation Board President Anne Howard came forward to kick off the presentation of the evening’s awards. Federation Board member Philomena Asante intro-duced this year’s President’s Award honoree, Dr. Deborah Allen, describing her as “a true champion for Children with Special Health Care Needs and their families”. Dr. Allen spoke of the importance of parent advocacy, noting that “Every child

needs at least one adult who is ir-rationally crazy about them.”

The Martha Ziegler Founders Award was presented to Amy Weinstock. Amy was introduced by Federation Board member Tere Ramos who said that Amy embodied Federation Founder Martha Ziegler’s spirit and ability

to advocate for positive change, as evidenced by her ability to mobilized thousands of people to write, contact, or visit legisla-tors, ensuring the passage of autism insurance legislation (AR-ICA) through which thousands of individuals in MA have gained access to therapy. In recognizing the many people who contributed to the success in getting ARICA passed, Amy paid homage to Mar-tha’s legacy by noting “my work is really a continuation of the sys-temic change that Martha started, and it’s an honor and privilege to get to do it”.

The evening’s final honoree was Maureen Brenner, Head of School at the Riverview School, who received the Patricia Blake Advocacy Award. Maureen was introduced by Ned Reichenbach and his father, Federation Board member John Reichenbach. Mau-reen congratulated the Federa-tion on the work they have done over the years in empowering par-

ents to advocate for their children, noting that the Federation had “written the book” on advocacy. She also urged all in at-tendance to support young people in finding their own voices, and becoming advocates for themselves, saying “It’s wonderful to see how empowered young people can be, and what good decisions they can make for themselves when they’ve been taught to use their own voice…when young people with spe-cial needs are given opportunities equal to those that are giv-en to their non-disabled peers, they embrace them, and they surprise themselves.”

Susan Wornick

D’Ja View Chorus

Dr. Deborah Allen

Amy Weinstock

Maureen Brenner andAmy Carroll

Jameel Webb-Davis shared the heart-warming story of how the Federation has helped her family. Watch “Jameel’s Story” at:https://youtu.be/sPc27C8tZxo

This beautiful vessel necklace, created by Liliana Glenn of Liliana Bead in memory of former Federation Board Member Miryam Wiley, was auctioned at the event.

Plan Now to “Walk, Roll, Shobble, Stroll*” with us in September! Summer is a wonderful and relaxing time to enjoy friends and family, and we hope you are having lots of fun! It is also a good time to start thinking about Fall family activities, and we hope you will consider joining us for our fourth annual family fundraising event and picnic, “Walk, Roll, Shobble*, Stroll for Children with Special Needs”! This year’s event will be held on Sunday, September 25th, from noon – 3pm (rain or shine) at the Nature Trail on the grounds of the Pappas Rehabilita-tion Hospital for Children (formerly Massachusetts Hospital School), 3 Randolph Street, Canton, MA.

This is a fun and easy way to support the Federation and here is how you can participate! This is a “free” event in that there is no registration fee required. We do ask each walker to com-mit to raising $100; that’s just 10 friends who will each “spon-sor” you as a walker at $10 each! Or put together a team of walkers, with each team member committed to raising $100!

Plan now to put together a team of family, friends, and col-leagues, and come join Federation staff and other families for a great day of networking, family activities, food, music,

games and prizes (and of course the Walk!) all to support children

with special needs and their families. There are two ways

to register! Visit www.fcsn.org to register online. Or simply fill out the registra-tion form and mail it to us at the address provided!

We hope to see you there!

Walk, Roll, Shobble, Stroll 2016 Registration Form

Register for Walk, Roll, Shobble, Stroll at fcsn.org/walk or complete this form

and fax or mail it to:

Federation for Children with Special NeedsThe Schrafft Center • 529 Main Street, Ste. 1M3

Boston, MA 02129 • Fax: 617-241-0330

Walker’s Name ______________________________

Address ____________________________________

City _______________________________________

State_________________ Zip __________________

Phone _____________________________________

Email ______________________________________

Check one: mAdult mTeen mChild

Check one: mIndividual Walker mTeam (family incl.)

Team Name _________________________________

Team Leader ________________________________

Team Category: mFamily/Friends mBusiness/Corp.mClub/Org./School/Place of Worship

By signing this form, I hereby waive all claims against the Federation for any injury I or my child might suffer in this event. I grant full permission for the Federation to use photographs of me in legitimate accounts and promotions of this event.

Signature ___________________________________

Parent/Guardian _____________________________(if under 18 years old, parent/guardian must also sign)

How did you hear about Walk, Roll, Shobble, Stroll?___________________________________________

mPlease send me _______ extra brochures.

mPlease contact me about volunteering before, during, or after Walk, Roll, Shobble, Stroll

mPlease send me information about the Federation

mI cannot attend Walk, Roll, Shobble, Stroll but I’ve enclosed a donation of ____________ to support families of children with special needs.


10

La reautorización de la Ley de Educación Primaria y Secund-aria (Elementary and Secondary Education Act, ESEA), ante-riormente conocida como “Que Ningún Niño Se Quede Atrás” (No Child Left Behind, NCLB), se completó cuando el Pres-idente firmó el 10 de diciembre de 2015 una nueva ley con-ocida como Cada Estudiante Triunfa (Every Student Succeeds Act, ESSA). Esta ley ha existido con diferentes nombres desde 1965. Su propósito principal es servir como ley de derechos civiles para ofrecer igualdad de oportunidades educativas a todos los estudiantes, incluso los que tienen dis-capacidades. La aplicación plena de la nueva ley ocurrirá en 2017 y 2018 y el ciclo escolar 2016-2017 será un período de transición. Con la promulgación de la ley ESSA, todas las ex-enciones de la ley NCLB caducarán el 1 de agosto de 2016, fecha en la cual entrará en vigor la nueva ley.

La nueva ley ESSA busca responder a algunos de los puntos problemáticos de la ley NCLB y establece disposiciones para asuntos como las evaluaciones alternativas revisadas y una mejor implementación del Diseño Universal para el Apren-dizaje (DUA). Además, contiene lenguaje destinado a mejorar el ambiente escolar y restringir el uso de técnicas de sujeción y separación en las escuelas.

Evaluaciones alternativas revisadas La ley ESSA exige que los estudiantes que participan en una evaluación estatal alternativa reciban instrucción basada en el contenido académico del grado, y que no se les administren evaluaciones alternativas sin haber recibido primero dicha in-strucción. También exige que las evaluaciones alternativas se basen en las normas de contenido académico del estado para todos los estudiantes.

La ley ESSA exige que los estados promuevan la participación y el progreso de todos los estudiantes en el plan de estudios de educación general, incluso

los que tomen una evaluación alternativa.

Diseño Universal para el Aprendizaje (DUA) con to-dos los contenidos temáticosLa ley ESSA incluye el Diseño Universal para el Aprendizaje en su definición de alfabetización integral. El Diseño Univer-sal para el Aprendizaje es una serie de principios para la elab-oración de planes de estudios que les den a todos los alumnos igualdad de oportunidades para aprender. La ley ESSA exige que la alfabetización integral se aplique en todos los conteni-dos temáticos. No tiene sentido aplicarla solamente en lectura o inglés (English-Language Arts). Visite el National Center on Universal Design en CAST www.udlcenter.org.

Mejor ambiente escolar La ley ESSA puede requerir que las escuelas acepten asisten-cia técnica sobre mejores prácticas para mejorar el ambiente

y la seguridad escolar. Esto puede incluir eliminar la intimi-dación, responder al uso inapropiado y peligroso de métodos de sujeción y separación, y aumentar el número de estudi-antes con discapacidades que son educados en el aula general.Los cambios de la ley ESSA pueden apoyar los programas ed-ucativos individualizados

Muchos de los cambios introducidos en la nueva ley ESSA serán útiles en las reuniones del programa educativo individ-ualizado (IEP, por sus siglas en inglés) para que los padres eleven las expectativas académicas y fortalezcan los servicios escolares para los estudiantes con discapacidades.

Consulta significativa de las partes interesadas La ley ESSA exige que cada estado elabore los planes de imple-mentación en consulta con las partes interesadas, incluidos los padres. Las decisiones sobre los requisitos de responsabilidad escolar con respecto al rendimiento académico de los estudi-antes con discapacidades se tomarán a nivel estatal y local para el ciclo escolar 2017-18. Comuníquese con el Departamento de Educación Primaria y Secundaria de Massachusetts para ob-tener más información sobre las oportunidades para partici-par. Visite www.doe.mass.edu y busque “ESSA”.

Las escuelas son responsables de los estudiantes con discapacidades.La ley ESSA exige que como mínimo el 95% de los estudiantes (incluyendo a los que tienen discapacidades) participen en el sistema de evaluación estatal (MCAS). Es importante entend-er que la regla del 95% de participación se aplica a todos los estudiantes de cada escuela y de cada subgrupo estudiantil. En otras palabras, si no se evalúa a los estudiantes de un subg-rupo, la escuela podría incurrir en una violación aun si cumple la regla con los demás subgrupos.

La ley ESSA también exige que se informen las calificaciones de cualquier subgrupo con más de 30 estudiantes. Algunas personas creen que ése número es demasiado alto y que mu-chas escuelas podrían quedar exentas de presentar informes si tienen muy pocos alumnos. Por lo tanto, han recomendado que el número se reduzca a un valor “n” de 10.

Por último la ley ESSA exige que los datos se presenten para todos los subgrupos de estudiantes mencionados en la ley, sin eliminar ni combinar subgrupos. Esto significa que la categoría actual de Massachusetts de “estudiantes con muchas necesi-dades” quizás deba desglosarse en diferentes grupos de alumnos.

Más recursos: A medida que la implementación de la ley ESSA avance, se conocerán más detalles y consejos para las familias sobre cómo abogar a favor de sus hijos en la escuela.

Mientras tanto, pueden visitar www.advocacyinstitute.org/ESSA/index.shtml para obtener información adi-cional.

Ley Cada Estudiante Triunfa: ¡La transición empieza este año escolar!

SUMMER 2016

11

Using compelling story telling and heart-wrenching true sto-ries, James Redford takes the viewer inside the classrooms and halls of Lincoln High in Walla Walla, Washington for a close up look at how one high school has made a difference in the lives of six students. Steven, a student with intellectual potential and a number of adverse childhood experiences which include a sub-stance-using mother, teeters between completely dropping out or going on to college. Kelsey – a beautiful young woman who has already overcome drug addiction only to become entan-gled in a problematic relationship with a fellow classmate. And handsome and talented Aron, whose anxiety does not allow him to speak or make eye contact with his peers or teachers.

Each student’s story is examined both in and out of the class-room. The film focuses on the personal lives of each young adult while the school tries various interventions to keep them on track to graduation. The principal of Lincoln High School, Jim Sporleder, explains early in the film, that the students can’t tell the difference between a real tiger and a “paper tiger” because their whole world is unpredictable and feels unsafe. He makes sure his teachers use kindness and empathy with every student, but especially those who are falling apart. In one emotional segment of the film, one of the students sends a series of angry and awful texts to his English teacher who

responds with statements like – “I think you are going through a rough time; I understand you must be very angry; just know that I love you .” These teachers are allowed to take emotional risks with their students and in the end, the risks allow a big payoff. All six students graduate, one is off to college, and the teachers introduce each one with a litany of successes they achieved throughout the year.

The Recruitment, Training and Support Center partnered with Cambridge Rindge and Latin High School to present a show-ing of the film to teachers, students, parents, administrators, school committee members, and members of the Cambridge community. A panel discussion followed with many questions about how to move forward with a trauma informed approach. Several new initiatives are being introduced throughout the Cambridge Public Schools this fall.

The RTSC has scheduled several more free showings of the film, Paper Tigers, throughout the state over the next several months. Please visit www.fcsn.org/rtsc/1878-2/ for more information and to register for a viewing near you.

Trauma and Learning Through the Director’s Lens: Paper TigersBy Jane Crecco, MS, MEd, Training and Support Specialist at the Recruitment, Training and Support Center


12

Parents and individuals with Fetal Alcohol Spectrum Disor-ders (FASD) would like to be part of the Federation for Chil-dren with Special Needs family. We need your support and advocacy. FASDs are brain-based developmental disabilities, caused by the consumption of alcohol by mother while preg-nant. The impact on daily functioning varies. Some common problems that individuals with an FASD have are deficits in executive functioning, social skills, receptive language skills, and working memories.

They struggle to grasp concepts of time or money, lack adap-tive functioning and independent living skills, have low self-esteem and poor emotional regulation. As children get older the expectations are greater than their abilities. They need more support, not less. Because FASDs are under/mis-diagnosed, they are an ‘Invisible” disability.

Based on recent national studies, it is estimated that 2-5% of Massachusetts’children have an FASD, far more than chil-dren with Autism Spectrum Disorders. The MA legislature allowed children with ASD (with an IQ above the approx-imate 70 IQ cut-off) to access MA Department of Develop-mental Services, while those with an FASD with the same or more functional limitations are excluded, in spite of the

fact that their brain disability prevents them from accessing their higher IQ. As a result, thousands of children and young adults are failing in our society.

The MA Department of Children, Youth and Families reports frequent suspected FASDs in their families; studies indicate

Fetal Alcohol Spectrum Disorder: A Developmental DisabilityBy Pat MacNeil & Colleen C., Parents of Children with an FASD

Continues on page 15

SUMMER 2016

13

A student’s vision is one of the most important parts of plan-ning for a life after high school. Without a clear idea of what a student wants to do for work, where they want to live, how they’ll get around or who they will hang out with, it is very difficult to create a strong transition plan. While it is import-ant for parents and professionals to assist students in finding their vision for life after high school, it is possibly even more important to help students develop their own vision.

Allowing students themselves to plan for their future means that young adults with disabilities are given the chance to par-ticipate in their lives the same way those without disabilities are often encouraged to do. When students are given control of their life, they have more of an opportunity for success and happiness. Below are some things students should begin thinking about as they plan for life after high school.

Where will I live?What will I do during the day? (School, work, day programs, social activities?)What is my dream job?What skills do I need for this job?How will I get around?

Who can help me learn skills for living and working?

Allowing students to practice and explore skills and strengths during high school provides them opportunities to decide what is best for them after high school. Goals may change throughout high school and that’s ok. Most people begin high school with many goals and they often change as they learn more skills and have new experiences. Starting with big goals and narrowing them down is something we all do. What is important is helping a student find and explore their vision.

Encouraging students’ dreams also helps them to build con-fidence in their decision-making and may help them to find their voice. Allowing students to find their voice is an import-ant skill for adulthood and something that can be used to help student achieve their goals for life after high school. This is a valuable tool as young adults begin to advocate for themselves and for their needs. For example, a student may need to advo-cate for assistive technology at work or may need to advocate for disability services at college. Practicing self-determination through advocacy will help students to gain confidence and to feel respected as they leave high school. The more engaged a student is in planning their future, the more likely they are to be engaged and the more promising their future will be.

Student VisionBy Caite Eilenberg, Graduate Intern at the LINK Center


14

Completou-se a renovação da Lei do Ensino Fundamental e Médio (ESEA, sigla em inglês), conhecida anteriormente como a lei Nenhuma Criança Fica para Trás (No Child Left Behind - NCLB) quando o Presidente dos Estados Unidos promulgou a lei Todo Aluno Triunfa (Every Student Succeeds Act - ESSA) em 10 de dezembro de 2015. A lei existe, sob out-ros nomes, desde 1965. Seu propósito principal, como uma lei de direitos civis, é oferecer oportunidades iguais na edu-cação para todo aluno, inclusive aqueles com deficiências. A implementação plena da nova lei ocorrerá no ano letivo de 2017-2018, e o ano letivo de 2016-2017 será um ano de tran-sição. Com a aprovação da lei ESSA, todas as isenções da lei NCLB vencerão em 01 de agosto de 2016, e a nova lei passará a vigorar.

A nova lei ESSA visa resolver partes problemáticas da lei NCLB com novas provisões, como por exemplo, revisar as avaliações alternativas e melhorar a implementação do Design Univer-sal de Aprendizagem (UDL), e fornecer orientações para mel-horar o clima escolar e limitar o uso de técnicas de contenção física e isolamento nas escolas.

Revisão das avaliações alternativasO requisito sob a lei ESSA é que alunos que participam da avaliação alternativa estadual recebam instrução baseada no conteúdo acadêmico de seu nível escolar, e que não partici-pem de uma avaliação alternativa sem ter primeiro recebido tal instrução. A lei ESSA também exige que as avaliações al-ternativas sejam baseadas nos padrões acadêmicos estaduais para todos os alunos.

A lei ESSA exige que os estados promovam o en-volvimento e o progresso de todos os alunos no

currículo de educação geral, inclusive aqueles que participam de uma avaliação alternativa.

Design Universal de Aprendizagem (UDL) para todas as disciplinasA lei ESSA inclui o UDL em sua definição de instrução inte-gral de literacia. O Design Universal de Aprendizagem é um conjunto de princípios para o desenvolvimento curricular que fornece a todos os alunos oportunidades iguais para apren-der. A lei ESSA exige que a instrução integral de literacia seja implementada para todas as disciplinas. (Não faz sentido im-plementar o UDL somente nas aulas de leitura ou de língua e literatura.) Visite o Centro Nacional de Design Universal em CAST www.udlcenter.org.

Melhor clima escolar A lei ESSA pode exigir que as escolas aceitem auxílio técni-co sobre as melhores práticas para melhorar o clima e a se-gurança escolar. Isso pode incluir a eliminação de bullying, medidas para abordar o uso inapropriado e perigoso de con-tenção física e isolamento e o aumento da quantidade de

alunos com deficiências que são educados na sala de aula de ensino geral.

As mudanças da lei ESSA podem ajudar os Programas de Ensino IndividualizadoMuitas mudanças da nova lei ESSA ajudarão os pais nas re-uniões do Programa de Ensino Individualizado (IEP, sigla em inglês) a aumentar as expectativas acadêmicas e fortalecer os serviços escolares para alunos com deficiências.

Planejamento conjuntoA lei ESSA exige que cada estado crie planos de implemen-tação que deverão ser desenvolvidos junto com as partes interessadas, inclusive os pais. As decisões serão tomadas em nível local e estadual até o ano letivo de 2017-2018 com relação aos detalhes dos requisitos quanto à responsabilidade das escolas pelo desempenho acadêmico dos alunos com defi-ciências. Entre em contato com o Departamento de Ensino Fundamental e Médio de Massachusetts para aprender mais sobre como envolver-se. Consulte http://www.doe.mass.edu e procure “ESSA”.

As escolas são responsáveis pelos alunos com deficiênciasA lei ESSA exige que, no mínimo, 95% dos alunos (inclusive aqueles com deficiências) participem do sistema estadual de avaliação (MCAS). É importante entender que essa regra da lei ESSA quanto à participação de 95% aplica-se a todos os alunos em cada escola e cada subgrupo de alunos. Ou seja, se os alunos de um subgrupo não forem avaliados, a escola pode estar infringindo a regra, mesmo se ela atendê-la em relação a todos os outros subgrupos.

A lei ESSA também exige que as notas dos alunos sejam comu-nicadas quando um subgrupo tiver mais de 30 alunos. Alguns defensores consideram esse número alto demais e temem que resulte na exclusão de muitas escolas por terem poucos alunos. Portanto, alguns têm recomendado que o número seja reduzido para 10.

Finalmente, a lei ESSA exige que os dados de cada subgrupo listado na lei sejam comunicados, sem eliminar ou combinar quaisquer subgrupos de alunos. Isso significa que seja pos-sível que a categoria atual em Massachusetts de “alunos com muitas necessidades” tenha que ser separada em diferentes subgrupos de alunos.

Recursos adicionais:À medida que a implementação da lei ESSA progredir, mais detalhes serão anunciados, assim como dicas para as famílias sobre como proteger seus filhos em ambientes escolares. En-quanto isso, consulte www.advocacyinstitute.org/ESSA/in-dex.shtml para informações adicionais.

Lei Todo Aluno Triunfa: a transição começa este ano letivo!

SUMMER 2016

15

This book is heartfelt and almost gritty in its honesty. Amy Sil-verman, journalist and parent of a daughter with Down syn-drome, bares her soul in her personal reflections on topics from the moments after her daughter Sophie was born, to thinking back to the weeks before her birth when she knew Sophie might have Down syndrome. Ms. Silverman knew she would not have an abortion and she knew she did not want to be the mother of a child with Down syndrome. She decided to take things as they came, but was determined to get her questions answered.

Silverman described how she focused on the one thing that in the beginning made Sophie stand out from her, her husband, Ray, and her older daughter, Annabelle. They all have curly hair. When she and her husband met with the genetic coun-selor, the first question she asked was would her baby have curly hair? When she was told no, probably not, that was the beginning of Amy Silverman’s grief. She so wanted Sophie to have curly hair that she could style, fix up, and dress up, just as she did with Annabelle.

Amy sought answers to this question and all her questions from every scientist she could contact. As a journalist, she gained access easier than most parents would have been able to. In addition to the question about why people with Down syndrome almost universally have straight hair, (she nev-

er found the answer), she searched for information across the life cycle, from birth, to aging. The information she reports is based mostly on anecdotal information; not on strict science. Sophie has a heart defect and there is a thorough and sometimes graphic explanation of that process which may impact parents as ei-ther helpful or frightening.

As a mom, Amy has developed a deep and honest relationship with Sophie. She has moments when she continues to grieve for the baby she did not have. She has grown to know Sophie as a new person, separate from the child she expected. This has enabled the two of them to grow together on this journey of learning about the world; their similarities and their differ-ences in it. There is no doubt that she is a passionate advocate for Sophie. Their relationship is also one of equals, friends, a pair ho, to each other, say what they mean and mean what they say. It’s great to see so much respect between mother and daughter in such a free and refreshing relationship.

I recommend this book to parents at all stages of learning about acceptance of their child with special needs, especially the first two chapters. When parents feel the book is getting too far ahead of where they are, I suggest they put it away for awhile and move ahead at their own pace.

By Amy Silverman, Woodbine House, 2016, 282 pp.Book Review by Dotty Robison, Parent of a child with special needs

Book Reviews: My Heart Can’t Even Believe It - A Story of Science, Love, and Down syndrome

that juvenile justice system, prisons, and shelters are also filled with people with undiagnosed and/or untreated FASDs. These kids are not being “behavioral” or willful. Their difficulties stem from brain damage. As parents, we’ve learned that our children’s struggles to read, write or manipulate information were not willful, nor was their frustration simple intolerance.

Training advocatess, especially the surrogate parenting pro-gram, about the effects and interventions for children with FASD is essential, as well as access to other supports the Federa-tion offers. Outcomes of individuals can be much improved with the understanding and appropriate interventions. We need to provide increased FASD risk identification and FASD-informed interventions. It will save money and ultimately save lives. We need Awareness, Acceptance, Advocacy and Support from the Federation and other members of the disability community.

For more information about FASD in Massachusetts, contact Enid Watson, the MA FASD State Coordinator: [email protected].

Fetal Alcohol Spectrum Disorder: A Developmental Disability (continued from page 12)

Exchanging Ideas

The Federation rolled out the red carpet for visitors from the University of Iowa for the AMCHP Technical Assistance Mentoring Exchange. Staff provided lots of information about the many programs and activities at the Federation to engage and support diverse families of children with special health care needs.The Iowa folks returned home with many new ideas to explore in the future. We look forward to continuing the conversation with them.

Oahn Bui, Peggy Swails, Rachel Swanson-Holm, Erika Hertel,Rich Robison, Elaine Gabovitch, & Cathy Hickey

The Schrafft Center529 Main Street, Suite 1M3

Boston, MA 02129

617-236-7210 Voice/TTY | MA Toll Free 800-331-0688 | Western MA 413-323-0681 | www.fcsn.org | [email protected]

FEDERATION FOR CHILDRENWITH SPECIAL NEEDS

Sunday, September 25, 2016 | Noon-3pm (rain or shine) at the Nature Trail on the grounds of the Pappas Rehabilitation Hospital for Children (formerly Massachusetts Hospital School)

3 Randolph Street, Canton, MA

(See page 9 for more info)

Every Student Succeeds Act (ESSA): Transition begins with this ...

Documents

Transcript of Every Student Succeeds Act (ESSA): Transition begins with this ...