SUMMER 2016
FEDERATION FOR CHILDREN
WITH SPECIAL NEEDS
Every Student Succeeds Act (ESSA):
Transition begins with this school year!
IN THIS ISSUE
1 Every Student Succeeds Act
(ESSA): Transition begins with
this school year!
(English, Español, Português)
3 From the Executive Director:
Transition: It’s all about
expectations, I guess!
4 Education Department
Releases Guidance on Rights
of Students with ADHD
6 Top Ten Ways to Be Active in
Your Child’s School
7 Planning For Emergencies
8 Gala 2016 – Celebrating Every
Child: A Lucky Night for All!
9 Plan Now to “Walk, Roll,
Shobble, Stroll*” with us in
September!
11 Trauma and Learning
Through the Director’s Lens:
Paper Tigers
12 Fetal Alcohol Spectrum
Disorder: A Developmental
Disability
15 Book Reviews: My Heart Can’t
Even Believe It - A Story of
Science, Love, and Down
syndrome
And More...
Register Now for
Walk, Roll, Shobble, Stroll
The Federation’s 4th Annual
Fundraising Walk
(For more information see page 9)
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
INFORMING,
E D U C AT I N G ,
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 areas
ESSA 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.
EMPOWERING
Continues on page 5
FAMILIES
Federation for Children with Special Needs
AGW - Autismo Genios del Mundo
Por Maribel Rueda, AGW
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 diagnosticados 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 consultor 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 pidiendo Ellen Degeneres a su fiesta. Ver www.huffingtonpost.com/2014/02/04/esteban-barriga_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.
NEWSLINE
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 necessarily reflect views or policies of the U.S.
Department of Education, or of the Federation 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 Special Needs; some material may carry other
copyrights as well (noted where appropriate). 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 occasionally be made available to organizations in
which we believe our readers may have
interest. If you wish your name to be withheld, 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 assistance to parents of children with disabilities, 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, President
Michael Weiner, Treasurer
Patricia 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
2
SUMMER 2016
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 appointment at one of the large Boston hospitals
for a routine check-up. Amy, who is incredibly 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 activity at home and work and how things
were going.
Her point was well made. The doctor, of course, was trying to be encouraging and affirm Amy’s gifts of
social discourse. She saw that she
would be an asset and probably enjoy the opportunity. Amy was a little more practical and to the point.
People with disabilities deserve the
opportunity to be productive, contributing members of their communities and affirmed by being paid for
the services they render.
“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
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 particular, she wondered if Amy might like to become a “Greeter” 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 immediately. 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?”
Rich Robison
Transition for students is designed to assist students to obtain competitive integrated employment, post-secondary education or independent living. Students
engaging in self-determination and actively 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 members and individuals with disabilities to embrace the Transition and achieve full self-determination for their lives.
Without thinking about it – Amy teaches me that it can
and does happen.
Rich Robison
MLK Summer Interns at the Federation
This summer the Federation was again pleased to be a non-profit partner in John Hancock’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, configuring 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 Federation wishes both of these outstanding young people great success in their futures and thanks them for their commitment as this year’s MLK Summer Scholars!
3
Federation for Children with Special Needs
Education Department Releases Guidance on Rights
of Students with ADHD
On July 26, 2016, the U.S. Department of Education Office for Civil Rights issued guidance clarifying the obligation 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 appropriate 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 prohibits 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 protections 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 services 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.
Continues next page
4
SUMMER 2016
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 inappropriate 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 IEPs
Many 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.
cluding students with disabilities) participate in the state assessment 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 concerned 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.
Meaningful Stakeholder Consultation
ESSA requires each state to create implementation plans
that are to be developed in consultation with stakeholders, 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. Contact the MA Department of Elementary and Secondary Education to learn more about opportunities for involvement.
Visit www.doe.mass.edu and search for ESSA.
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 Massachusetts category of “high needs students” may need to be separated into different groups of students.
Schools Are Accountable for Students with Disabilities
ESSA requires that a minimum of 95% of all students (in-
In the meantime, visit www.advocacyinstitute.org/
ESSA/index.shtml for additional information
Education Department Releases
Guidance on Rights of Students
with ADHD
More resources: As the implementation of ESSA moves forward, greater details will become available, as well as tips
for families on how to advocate for their children in school
settings.
The Federation Collaborates
with Eastern Bank
(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 letter 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 student 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,
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!
Catherine E. Lhamon Assistant Secretary for Civil Rights
5
Federation for Children with Special Needs
Top Ten Ways to Be Active in Your Child’s School
By Leslie M. Leslie, MassPAC Director
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, Henderson 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!
6
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 active 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-engagement-in-every-school-for-every-child
SUMMER 2016
Planning For Emergencies
By Mary Castro Summers, Project Director, Family TIES of Massachusetts (FCSN)
Life is full of unexpected occurrences. Emergencies may occur 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 winter, think of natural disasters such as weather-related problems: 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, seemingly 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 emergencies, 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 emotional 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 medications, and first aid and medical supplies. Prepare weather-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 container with copies of important 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 responders 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.
Resources for Families
Exceptional Lives has launched a new version of its free online Guides designed for parents of children or adult family 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 action steps. Each Guide asks a parent simple questions about
their family’s situation, then uses their answers to display information that is current and relevant to them.
All Guide content is gathered from expert sources, including 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 services we can be getting, and how to get them!” said Natalie Sequea 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. Exceptional 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 Internet. 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.
7
Federation for Children with Special Needs
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 evening 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 welcomed by the Federation’s Executive 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.
Susan Wornick
Before dinner, guests were treated to a performance by the D’Ja
View Chorus, from Riverview
School who performed an original 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!”
D’Ja View Chorus
Following dinner, Federation Board President Anne Howard
came forward to kick off the presentation of the evening’s
awards. Federation Board member Philomena Asante introduced 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
Jameel Webb-Davis
shared the heartwarming story of how
the Federation has
helped her family. Watch
“Jameel’s Story” at:
https://youtu.be/
sPc27C8tZxo
8
needs at least one adult who is irrationally 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
Dr. Deborah Allen
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 legislators, ensuring the passage of autism insurance legislation (ARICA) 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 Martha’s legacy by noting “my work
is really a continuation of the systemic change that Martha started,
and it’s an honor and privilege to
Amy Weinstock
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. Maureen congratulated the FederaMaureen Brenner and
tion on the work they have done
Amy Carroll
over the years in empowering parents to advocate for their children, noting that the Federation
had “written the book” on advocacy. She also urged all in attendance 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 special needs are given opportunities equal to those that are given to their non-disabled peers, they embrace them, and they
surprise themselves.”
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 Rehabilitation Hospital for Children (formerly Massachusetts Hospital
School), 3 Randolph Street, Canton, MA.
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 Needs
The Schrafft Center • 529 Main Street, Ste. 1M3
Boston, MA 02129 • Fax: 617-241-0330
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 commit to raising $100; that’s just 10 friends who will each “sponsor” you as a walker at $10 each! Or put together a team of
walkers, with each team member committed to raising $100!
Walker’s Name_______________________________
Plan now to put together a team of family, friends, and colleagues, 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 registration form and mail it to us
at the address provided!
Email_______________________________________
We hope to see you there!
Address_____________________________________
City________________________________________
State_________________ Zip___________________
Phone______________________________________
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.
Federation for Children with Special Needs
Ley Cada Estudiante Triunfa: ¡La transición empieza este
año escolar!
La reautorización de la Ley de Educación Primaria y Secundaria (Elementary and Secondary Education Act, ESEA), anteriormente conocida como “Que Ningún Niño Se Quede Atrás”
(No Child Left Behind, NCLB), se completó cuando el Presidente firmó el 10 de diciembre de 2015 una nueva ley conocida 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 discapacidades. 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 exenciones 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 Aprendizaje (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 instrucción. 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 todos los contenidos temáticos
La ley ESSA incluye el Diseño Universal para el Aprendizaje
en su definición de alfabetización integral. El Diseño Universal para el Aprendizaje es una serie de principios para la elaboración 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 contenidos 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 asistencia técnica sobre mejores prácticas para mejorar el ambiente
10
y la seguridad escolar. Esto puede incluir eliminar la intimidación, responder al uso inapropiado y peligroso de métodos
de sujeción y separación, y aumentar el número de estudiantes con discapacidades que son educados en el aula general.
Los cambios de la ley ESSA pueden apoyar los programas educativos individualizados
Muchos de los cambios introducidos en la nueva ley ESSA
serán útiles en las reuniones del programa educativo individualizado (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 implementación en consulta con las partes interesadas, incluidos los
padres. Las decisiones sobre los requisitos de responsabilidad
escolar con respecto al rendimiento académico de los estudiantes 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 obtener más información sobre las oportunidades para participar. 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 entender 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 subgrupo, 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 muchas 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 necesidades” 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 adicional.
SUMMER 2016
Trauma and Learning Through the Director’s Lens: Paper Tigers
By Jane Crecco, MS, MEd, Training and Support Specialist at the Recruitment, Training and Support Center
Using compelling story telling and heart-wrenching true stories, 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 substance-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 entangled 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 classroom. 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 showing 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.
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Federation for Children with Special Needs
Fetal Alcohol Spectrum Disorder: A Developmental Disability
By Pat MacNeil & Colleen C., Parents of Children with an FASD
Parents and individuals with Fetal Alcohol Spectrum Disorders (FASD) would like to be part of the Federation for Children 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 pregnant. 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 adaptive 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 children with Autism Spectrum Disorders. The MA legislature
allowed children with ASD (with an IQ above the approximate 70 IQ cut-off) to access MA Department of Developmental Services, while those with an FASD with the same
or more functional limitations are excluded, in spite of the
12
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
Continues on page 15
SUMMER 2016
Student Vision
By Caite Eilenberg, Graduate Intern at the LINK Center
A student’s vision is one of the most important parts of planning 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 important 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 participate 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 confidence in their decision-making and may help them to find
their voice. Allowing students to find their voice is an important 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 advocate 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.
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Federation for Children with Special Needs
Lei Todo Aluno Triunfa: a transição começa este ano letivo!
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 outros nomes, desde 1965. Seu propósito principal, como uma
lei de direitos civis, é oferecer oportunidades iguais na educação 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 transição. 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 Universal de Aprendizagem (UDL), e fornecer orientações para melhorar o clima escolar e limitar o uso de técnicas de contenção
física e isolamento nas escolas.
Revisão das avaliações alternativas
O 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 participem de uma avaliação alternativa sem ter primeiro recebido
tal instrução. A lei ESSA também exige que as avaliações alternativas sejam baseadas nos padrões acadêmicos estaduais
para todos os alunos.
A lei ESSA exige que os estados promovam o envolvimento 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 disciplinas
A lei ESSA inclui o UDL em sua definição de instrução integral 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 aprender. A lei ESSA exige que a instrução integral de literacia seja
implementada para todas as disciplinas. (Não faz sentido implementar 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 técnico sobre as melhores práticas para melhorar o clima e a segurança escolar. Isso pode incluir a eliminação de bullying,
medidas para abordar o uso inapropriado e perigoso de contenção física e isolamento e o aumento da quantidade de
14
alunos com deficiências que são educados na sala de aula de
ensino geral.
As mudanças da lei ESSA podem ajudar os Programas
de Ensino Individualizado
Muitas mudanças da nova lei ESSA ajudarão os pais nas reuniões do Programa de Ensino Individualizado (IEP, sigla em
inglês) a aumentar as expectativas acadêmicas e fortalecer os
serviços escolares para alunos com deficiências.
Planejamento conjunto
A lei ESSA exige que cada estado crie planos de implementação 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 deficiências. 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 deficiências
A 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 comunicadas 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 possível 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. Enquanto isso, consulte www.advocacyinstitute.org/ESSA/index.shtml para informações adicionais.
SUMMER 2016
Book Reviews: My Heart Can’t Even Believe It A Story of Science, Love, and Down syndrome
By Amy Silverman, Woodbine House, 2016, 282 pp.
Book Review by Dotty Robison, Parent of a child with special needs
This book is heartfelt and almost gritty in its honesty. Amy Silverman, journalist and parent of a daughter with Down syndrome, 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.
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 either helpful or frightening.
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 counselor, 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.
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 differences 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.
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-
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.
Fetal Alcohol Spectrum Disorder:
A Developmental Disability
Exchanging Ideas
(continued from page 12)
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 program, about the effects and interventions for children with
FASD is essential, as well as access to other supports the Federation 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: enidwatson@
healthrecovery.org.
Oahn Bui, Peggy Swails, Rachel Swanson-Holm, Erika Hertel,
Rich Robison, Elaine Gabovitch, & Cathy Hickey
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.
15
FEDERATION FOR CHILDREN
WITH SPECIAL NEEDS
The Schrafft Center
529 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]
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)