NewsLine
Spring 2002, Volume
23, Number 3
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Nine-year-old piano prodigy Matt Savage captured our imagination and kept us in the groove at this year's Annual Gala Event held on May 10th at the Royal Sonesta Hotel in Cambridge, MA. Matt, a jazz pianist from Sudbury, MA, performed magnificently as the leader of his own jazz ensemble, The Matt Savage Trio. Matt astounded the audience when he performed his own original compositions, as well as jazz standards by the greats"Miles Davis, Duke Ellington, and Charlie Parker"to name a few. His entertaining style and soulful music moved and enchanted the audience of over 350 people. Attendees described Matt as "amazing," "outstanding," and "totally awesome!"
Senator Jim Jeffords of Vermont and Julia Landau, Acting Director of the Massachusetts Advocacy Center, received The Martha Ziegler Founder's Award. Jeffords, who received the award in absentia (see related article with his acceptance speech), was recognized for his pioneering efforts and strong support for students with disabilities and, in particular, for his efforts to secure full funding for IDEA. Readers may recall that Senator Jeffords' historic decision to leave the Republican Party was, in part, due to his unsuccessful bid to secure the support of the Bush Administration for full funding for IDEA. Jeffords has been a leading voice in Congress for 26 years on behalf of Americans with disabilities. As the former Chairman of the Health and Education Committee, Senator Jeffords has left his fingerprints on every piece of major disability legislation since 1975. The Federation was proud to recognize his many achievements.
Julia Landau is widely recognized as a leader in the fight for equal education opportunities for all children, including those with disabilities. Among many accomplishments, Julia has led the fight for inclusion of children with disabilities in general education classrooms. Julia wrote the influential report published by the Mass Advocacy Center, "Out of the Mainstream." Her recent work has focused on the enforcement of our state's new Special Education laws, and her fight to ensure that students with disabilities are ensured an opportunity for fair participation in MCAS. Julia is a friend and valued ally of the Federation.
Joe Sciacca, Deputy Managing Editor for Politics at the Boston Herald, was our emcee for the evening. Joe's warmth and witty humor set just the right tone for a fun filled evening.
Proceeds from the Gala provide critically needed funds to support the work of the Federation. Over the past year, staff, volunteers, and board members worked together to ensure the financial success of this annual event. It is a collective effort and we are pleased to announce that this year's fundraising goal of $125,000 was not only achieved, but also surpassed! The annual silent auction alone yielded nearly $14,000! This figure represents contributions by over 150 restaurants and businesses.
The Federation commends all the donors, vol-unteers, program participants, and supporters who made this the best Gala yet. We are honored by your commitment to the Federation's mission and thank you for your support.
The IDEA Partnerships, funded by the U.S. Department of Education's Office of Special Education Programs (OSEP), are four national projects that deliver a common message about the landmark 1997 reauthorization of the Individuals with Disabilities Education Act (IDEA). For the past five years, these four partnerships have worked together to inform service providers (ASPIRE), administrators (ILIAD), families and advocates (FAPE), and policy makers (PMP) about IDEA, and strategies to improve educational results for children and youth with disabilities. The IDEA Partnerships represent a network of 105 organizations that work together to build collaboration, cooperation and communication in the delivery of special education services.
The ILIAD (Local Implementation by Local Administrator) Partnership provides ongoing support to local education administrators and leaders. As the country continues to implement IDEA, the ILIAD Partnership brings together the preeminent educational leadership associations and builds upon their strengths and expertise. The Federation for Children with Special Needs is a proud participant in the ILIAD partnership. To learn more about this and the other three partnerships contact:
The
Council for Exceptional Children
ILIAD IDEA Partnership
1110 North Glebe Rd.
Suite 300
Arlington, VA 22201-5704
877-CEC-IDEA (toll free)
866-915-5000 (TTY toll free)
www.ideapractices.org
The web site, www.ideapractices.org, includes exciting resources like the recently published Addressing the Over-Representation of African-American Students in Special Education: The Pre-referral Intervention Process, an Administrator's Guide, copyright 2002. This 45-page resource provides evidence that over-representation of African-American students in special education is a serious concern, and it explores the legal requirements related to over-representation. The guide explores ways to develop a school climate that respects diversity. It also offers methods of establishing a pre-referral intervention process that recognizes the role of cultural diversity.
(Senator Jim Jeffords of Vermont sent these remarks in acceptance of the Martha Ziegler Founder's Award at the Federation's Gala 2002. Senator Jeffords has been a leading voice in Congress for close to 26 years on behalf of Americans with disabilities. Most recently, in 2000, Jeffords has seen the House and Senate pass his reauthorization of the Developmental Disabilities Act. This legislation, which will be signed into law by the President, promotes access to community services for people with severe disabilities).
Thank you for inviting me to your celebration, and thank you for this great honor. Unfortunately, I could not be with you to accept this award, but I would like to extend my gratitude, and personally convey my appreciation to you for the great work you are doing to further the quality of life for children with disabilities. It is easy for me to advocate in Washington knowing that I can rely on people like you to really make a difference in the lives of families and children with disabilities.
When I first arrived in Congress in 1975, one of the first legislative initiatives I worked on was the Education for All Handicapped Children Act, now known as IDEA (Individuals with Disabilities Education Act). We wrote the legislation to ensure that children with disabilities receive the special education and related services they need.
Twenty-seven years ago, nearly half of all children with disabilities, approximately 2 million children, were not receiving a public education. Another 2 million children were placed in segregated, inadequate classrooms. Today, IDEA serves approximately 6 million children with disabilities. IDEA has been very successful in providing the basic constitutional right of an education to our children: dropout rates have decreased, graduation rates have increased, and the percentage of college freshmen with a disability has almost tripled. IDEA has helped individuals with disabilities become independent, wage-earning, tax-paying contributors to this nation.
I am proud of the good work that IDEA has done for families and children with disabilities, but our fight is not over. First, we must continue to fight for full funding of IDEA. Although Congress has increased IDEA funding in recent years, it has woefully failed to meet its obligation to fully fund IDEA. We must recognize that we cannot provide all of our children with the opportunity to achieve unless we support our children with adequate resources. Full funding would provide our schools with those desperately needed resources, and perhaps we could ensure that indeed, none of our children are left behind.
We must also fight for our youngest children with special needs. We must make sure that young children and their families have access to the full array of health, social, educational, and other support services so that all children enter school ready to learn and have the opportunity to fully participate in community life.
In addition, we cannot forget our older children as they prepare to leave school. Despite significant advances, too many of our children do not attain high school diplomas and unemployment among those with disabilities is way too high. We need to make sure that our children receive the appropriate services to transition out of school, so that when they finish school they can truly become independent, self-sufficient members of their communities.
Although we have made great strides over the years, there is still a lot of work to be done. I know that I can rely on all of you to continue to strive to make sure that all of our children have the opportunity to achieve. Again, thank you for this great honor.
by Richard Robison,
Executive Director
Federation for Children with Special Needs
A third grade teacher recently responded to her students' curiosity about the "special" kids down the hall. Before she offered any explanations, she asked them what they knew and didn't know about their neighbors.
Things we know about "special" kids:
Afterwards, the children had a chance to ask their visitor questions and learned that she could ride a bike, use a scooter and a skateboard. The thank you cards they sent revealed the important lessons they had learned. They told her she was a good story teller and a lovely dancer, was very talented, that "she rocked," they liked her style, loved the way she talked, and also liked S Club 7. One student in particular realized she had a lot in common because she is blind in one eye, has a vision teacher and needs to use a magnifying glass. Mostly, they appreciated her visit and thanked her for coming to their class, would always remember her, and be respectful to her.
Now that these 3rd graders have a better understanding of one person, hopefully they can increase their understanding of all individuals with special needs by simply walking down the hall, opening doors, and extending invitations for those students to come visit with them as well. We've come a long way down the road to understanding and acceptance, and sometimes that road starts with a short walk down the hall.
TRANSITION AT AGE THREE
Dear Expert,
My child is 2-and-a-half and has special needs. I'm concerned about
her transition from early intervention to preschool. What should I do?
Worried in Worcester
Dear Worried,
Change can be stressful, but the more prepared you are for the transition
out of early intervention, whether it be into a public special education
preschool program, a private preschool setting, community program or other
appropriate service, the better you and your child will be able to cope.
As part of your IFSP (Individualized Family Service Plan) you and your
early intervention (EI) providers should have developed a transition plan
that identifies transition strategies and a timeline for activities that
will help you and your child prepare for transition. If you think your
child will need special education services, your early intervention providers
will help facilitate a meeting between your family and representatives
from your Local Education Agency (LEA). State and Federal Special Education
laws provide important protections for children with disabilities and it
is to your advantage to learn about those laws. To start, I suggest you
attend a Basic Rights workshop, offered free of charge by the Federation
for Children with Special Needs, at various locations throughout Massachusetts.
There are several key differences between early intervention and special education. The Department of Public Health (DPH) manages the statewide early intervention system, which provides year round services. The Department of Education (DOE) manages the public school system and special education services are generally provided only during the school year. Another big difference between these two service systems is the eligibility criteria. Children who are at risk for developmental delays (due to environmental factors and certain child and family characteristics) can receive EI services, and services are designed to meet your family's needs. Children are only eligible for special education services if they have a disability that affects their ability to make effective progress in the general school curriculum and they need accommodations, modifications or special services and supports in order to participate and progress. These services will be noted on an IEP, which is designed to meet the child's needs.
Before the IEP can be developed, your child must be referred to the school system for a core evaluation. Your EI program may have already reported anonymous statistical information about your child to your school system for planning purposes. If you expect your child to transition into a special education preschool program, with your consent, your early intervention program will refer your child to the school system for an evaluation when your child is 2-and-a-half. Three months before the child's 3rd birthday, you, your EI program staff, and the LEA will have a 90-day meeting, where you will share information about your child, determine his or her eligibility for special education services, write an IEP and determine placement. You have 30 days to review the IEP before you sign it. If you disagree with something, you may pursue it with an Independent Education Evaluation (refer to the Spring 2002 issue of NewsLine). Don't reject the entire IEP; just reject the portion with which you disagree.
A Parent's Guide to Special Education, a DOE publication, can help you learn more about this process. The guide is available on our website at www.fcsn.org or by calling the DOE at 781-338-6203. The information specialists at the Federation are also here to help if you experience any difficulties in the transition process.
I am excited and pleased to announce that Robin Foley has agreed to become the new Project Director for Special Education Programs at the Federation, effective July 8, 2002. Robin has been a Federation Board member for over 6 years, and brings to her position a wealth of knowledge and a shared dedication to the families of children with special needs.
Along with her husband Jack, Robin is the parent of 3 children, one of whom has a disability. Her previous positions have included working as a Parent Liaison at the UMass Family Support Early Intervention Program, and as the Director of the Worcester ARC. Currently, Robin is a Vice President of the Seven Hills Foundation in Worcester. Robin also served a term on the Massachusetts Department of Education State Advisory Council, was Chairperson of the Department of Mental Retardation State Advisory Council, and is presently the co-chair of the Worcester Special Education Parent Advisory Council.
Among her duties in her new position, Robin will serve as the Federation's prime liaison with the Massachusetts Office of Special Education for Policy and Planning at the Department of Education, where she is both known and respected.
I am very excited
about having Robin join the Federation staff. Please join me in welcoming
her.
Richard J. Robison
Executive Director
Julia Landau, acting director of the Massachusetts Advocacy Center (MAC), graciously accepted the Martha Ziegler Founder's Award at the Federation's Gala. Following is the address Julia gave.
It means a great deal to receive this award from the Federation for Children with Special Needs, the premier parent organization in the state providing essential services and supports for parents and their children throughout the Commonwealth. It is particularly meaningful to receive an award in Martha Ziegler's name. Martha is a national leader and a pioneer whose efforts paved the way for thousands of children with disabilities and their parents throughout the country.
Many people shaped my personal views about disability civil rights. I first think of my good friend, John. John has cerebral palsy. As teenagers, I was stunned to see what many of you have experienced--waitresses, sales clerks, and others acted as if John were a child--or as if he wasn't even present. John received little academic instruction in school. He was expected to live as an adult with his mother or in an institution. Years later, when John visited me in Berkeley, California, he experienced the strength and independence of the disability civil rights community. He then successfully advocated for his own apartment in St. Louis. John remains a close friend, one I love dearly. He is so insightful, wise, compassionate, and funny. But, if truth be told, he has never been able to recover the opportunities and potential stolen by the lack of a real education.
My vision expanded when I went to Berkley in the 70s. Berkeley, where the disability civil rights movement began, is a community where my thoughts and experiences coalesced. There I found what's right--not only embodied in a totally inclusive community, but put into words--codified in new, exciting laws: Section 504 and IDEA.
Today, in 2002, the power of a strong community coupled with forceful laws is evident in Massachusetts. This year, the 30th anniversary of Ch.766, our state special education law, provides an opportunity to mark the incredible progress that this revolutionary law has ignited in a relatively short time in Massachusetts and across the country. While recognizing our successes, however, we also need to recognize the new challenges and barriers this generation of children with disabilities must face.
The barriers are huge.
First, massive cuts in state and local budgets place essential services in jeopardy. Unfor-tunately, in this fiscal climate we also know we are likely to increase scapegoating of children with disabilities, as the costs of educating these students will be blamed for a school district's or city's problems. Yet we know the real problem is inadequate funding from the state and federal governments, as well as unspoken assumptions that it's not really "worth it" to provide costly programs for children with severe disabilities.
This generation also faces the challenges of MCAS, the state graduation test for 10th graders. Students with disabilities are failing this test at alarming rates. Well over half of the high-school students with disabilities statewide continue to fail, even after the retest. The failure rates are even more alarming in urban areas: in Boston 90% of the 10th graders with disabilities failed the test last year, in Springfield, 98%, and in Holyoke 99%. These failure rates are unacceptable. A whole generation of children with disabilities is at risk, being deprived of diplomas necessary to pursue post-secondary or vocational opportunities.
Children also face the overhaul of our state special education laws. Newly enacted provisions will require concerted, sustained advocacy and vigilance to ensure that schools don't use the changed statute to lower expectations and cut vital services. I have no doubt, however, that we will overcome the serious challenges that lie ahead. Thanks to efforts of parents and advocates, our law remains strong, giving us the tools we need to demand equality that enables children to reach their potential. As before, we must continue to breathe life into these new laws. Yet today, we have myriad success stories that demonstrate what is possible: we know that when barriers are removed children can reach their potential, exceed expectations, and succeed in inclusive communities.
Our advocacy community is broad and powerful: we are parent, disability, and children's advocacy organizations; public interest and private lawyers; consumer organizations; teacher organizations; steadfast allies in the legislature; and the insiders in school districts and state agencies. Although I am deeply appreciative of this award, it is truly the strength of all of us--individuals and organizations--working in collaboration that needs to be recognized. Our strength and the strength of our laws leave me confident that these new challenges are surmountable.
Most importantly, the foundation of our power lies with the strength of students with disabilities and their parents. Every child with a disability and his or her parents are pioneers in their own community. Day by day and year by year, parents and students pave the way, slowly changing the attitudes and practices of teachers, students, and communities. Every week it's something different--fighting for appropriate reading instruction or behavioral supports, insisting on accommodations so a child can be in a school play, opening the door for a student to participate in an AP course--all to make sure their children have a level field and to eradicate the lowered expectations children with all kinds of disabilities still face. Sometimes it takes a legal battle. More often, though, it is students and their parents tirelessly making these day-to-day changes that will create lasting reform. I am fortunate and privileged to be a part of such a strong, powerful, and caring community.
Julia Landau, directora interina de Massachusetts Advocacy Center (MAC) aceptó con gusto el premio "Martha Ziegler Founder" en la fiesta de gala de la Federación. He aquí las palabras que Julia expresó.
Recibir este premio de la Federación Para Niños con Necesidades Especiales significa mucho para mi porque la Federación es la primera organización en el estado de Massachusetts que provee servicios esenciales y apoyo a los padres de familia y a sus hijos. También significa mucho recibir un premio en nombre de Martha Ziegler. Martha es una líder y una pionera a nivel nacional cuyos esfuerzos facilitaron el camino para miles de niños con discapacidades y sus padres en todo el país.
Muchas personas han influido mi visión personal acerca de los derechos civiles de las personas con discapacidades. En primer lugar pienso en mi buen amigo John. John tiene parálisis cerebral. Cuando éramos adolescentes me asombraba al ver, al igual que muchos de ustedes, que meseras, vendedores, y otras personas actuaban como si John fuera un niño, o como si no estuviera presente. John recibió poca formación académica en la escuela. Se esperaba que en su adultez viviera con su mamá o en una institución. Años después, cuando John me visitó en Berkeley, California, él tuvo la oportunidad de experimentar la fuerza y la independencia de la comunidad de derechos civiles de las personas con discapacidades. Después de eso, con mucho éxito, John luchó por tener su propio apartamento en St. Louis. John sigue siendo un amigo cercano, alguien a quien le tengo mucho cariño. Él es muy perspicaz, inteligente, compasivo y tiene un buen sentido del humor. Sin embargo, él nunca ha podido recuperar las oportunidades y el potencial que le fue robado debido a la falta de una buena educación.
Mi visión se abrió cuando fui a Berkeley en los años setenta. Berkeley, donde comenzó el movimiento por los derechos civiles de las personas discapacidades, es una comunidad en donde mis ideas y experiencias se unieron. Allí descubrí lo que es correcto, no sólo presente en una comunidad totalmente inclusiva, sino también puesto en palabras, codificado en leyes nuevas y fabulosas: Sección 504 e IDEA. Hoy, en el 2002, es evidente el poder que tiene una comunidad fuerte junto con leyes eficaces en Massachusetts. Este año, el trigésimo aniversario del Capítulo 766, la ley de educación especial de nuestro estado, ofrece una oportunidad para notar el progreso increíble que esta ley revolucionaria ha tenido en un período relativamente corto en Massachusetts y en el resto del país. Sin embargo, mientras reconocemos nuestros éxitos, también necesitamos reconocer los nuevos retos y las barreras que esta generación de niños con discapacidades tienen que enfrentar.
Las barreras son gigantes.
Primero, cortes masivos en los presupuestos estatales y locales ponen los servicios esenciales en peligro. Desafortunadamente, en este ambiente fiscal sabemos que es muy probable que los niños con discapacidades sean puestos en la línea de fuego cuando los costos de la educación de estos estudiantes sean vistos como la causa de los problemas de un distrito escolar o una ciudad. Aún así, sabemos que el verdadero problema es la inadecuada provisión de recursos por parte del gobierno estatal y federal, al igual que el hecho de asumir que no "vale la pena" ofrecer programas costosos para niños con discapacidades severas.
Esta generación también enfrenta los retos del MCAS, el exámen estatal de graduación para los estudiantes de décimo grado. Los estudiantes con discapacidades están reprobando este exámen en un porcentaje alarmante. Más de la mitad de los estudiantes con discapacidades en la secundaria (High School) en el estado continúan reprobando el exámen, aún después de la segunda oportunidad. Los porcentajes son aún más alarmantes en las áreas urbanas: en Boston el 90% de los estudiantes con discapacidades reprobaron el exámen; en Springfield, el 98%, y en Holyoke 99%. Estos porcentajes son inaceptables. Toda una gene-ración de niños con discapacidades está en riesgo, al negarseles la oportunidad de obtener el diploma que es necesario para continuar estudios después de la secundaria o vocacionales.
Los niños también enfrentan una renovación de las leyes estatales de educación especial. Nuevas provisiones requerirán defensoría y vigilancia concertadas y permanentes para asegurar que las escuelas no usen el estatuto que cambió para reducir las expectativas y para cortar servicios vitales. De todos modos, no tengo ninguna duda que venceremos los obstáculos que están en el futuro. Gracias a los esfuerzos de los padres y los defensores nuestra ley se mantiene fuerte, dándonos los medios que necesitamos para exigir la igualdad que le permita a los niños alcanzar su potencial. Como siempre, necesitamos darle vida a estas nuevas leyes. Aún hoy, tenemos muchísimas historias de éxito que demuestran lo que es posible: Sabemos que cuando se vencen las barreras, los niños pueden alcanzar su potencial, sobrepasar las expectativas, y tener éxito en comunidades inclusivas.
Nuestra comunidad defensora es extensa y poderosa: Somos organizaciones que apoyan y defienden padres, personas con discapacidades, y niños; abogados con intereses públicos y privados, organizaciones de consumidores; organizaciones de profesores; aliados leales en la legislación; y personas que trabajan en los distritos escolares y agencias del estado. Estoy muy agradecida por este premio, el cual nos fortalece a todos, tanto individuos como organizaciones, quienes trabajamos en colaboración, lo cual necesita ser reconocido. Nuestra fuerza y la fuerza de nuestras leyes me dan la confianza de que estos nuevos retos los podremos vencer.
Más importante aún, la base de nuestro poder está en la fortaleza de los estudiantes con discapacidades y sus padres. Cada niño con una discapacidad y sus padres son pioneros en su propia comunidad. Día tras día y año tras año, los padres y los estudiantes preparan el camino, cambiando lentamente las actitudes y las prácticas de los profesores, estudiantes y comunidades. Cada semana hay algo diferente: luchando por instrucción apropiada para leer o apoyos disciplinarios, insistir en acomodaciones para que un niño pueda estar en una obra de teatro de la escuela, dándole la oportunidad a un estudiante de participar en un curso avanzado, todo esto para asegurar que sus niños tengan las mismas oportunidades y eradicar las bajas expectativas que los niños con toda clase de discapacidades todavía enfrentan. Muchas veces esto requiere de una batalla legal. La mayoría de veces, sin embargo, son los estudiantes y sus padres quienes incansablemente hacen estos cambios día a día los que crearán una reforma permanente. Soy afortunada y tengo el privilegio de ser parte de una comunidad interesada, fuerte, y poderosa.
Julia Landau, diretora interina da Massachusetts Advocacy Center (MAC), amavelmente aceitou a Premiação que leva o nome da Fundadora Martha Ziegler, na Celebração de Gala da Federação. Julia agraciou o público presente com o discurso que se segue.
É uma grande honra aceitar este prêmio da Federação para Crianças com Necessidades Especiais, que é, sem sombra de dúvidas, a organização de pais líder do estado, no fornecimento de serviços e apoios essenciais para os pais e seus filhos em toda a Comunidade. É particularmente significativo receber este prêmio em nome de Martha Ziegler. Marta é uma líder nacional, uma pioneira, cujos esforços pavimentaram o caminho para milhares de crianças portadoras de deficiência, assim como para os seus pais, em todo o país.
Muitas foram as pessoas que contribuíram para modelar a minha visão pessoal sobre os direitos civis dos portadores de deficiência. Em primeiro lugar, penso no meu amigo John. John tem retardamento mental. Quando adolescentes, eu ficava espantada de ver o que muitos de vocês já tiveram a experiência--garçonetes, vendedores e outros agiam como se John fosse uma criança--ou mesmo como se ele não estivesse presente. John recebeu bem pouca instrução acadêmica na escola. Esperava-se que ele fosse viver com sua mãe ou numa instituição. Anos mais tarde, quando John visitou-me em Berkeley, Califórnia, ele pode experimentar a força e a independência da comunidade pelos direitos civis dos portadores de deficiência. Foi então que ele lutou por seu próprio apartamento, em St. Louis. John permanece um amigo muito próximo, um amigo que amo com ternura. Ele é tão intuitivo, inteligente, sensível e engraçado. Mas, se a verdade tem de ser dita, ele nunca pode recobrar as oportunidades e as potencialidades que lhe foram roubadas pela falta de um ensino de verdade.
Minha visão, minha expectativa, se expandiram quando fui para Berkley, nos anos 70. Berkeley foi onde os movimentos pelos direitos civis dos portadores de deficiência se iniciaram, trata-se de uma comunidade onde meus pensamentos e experiências conjuminaram-se. Lá eu encontrei o que era direito--não só encorpado numa comunidade inteiramente inclusiva, mas também posto em palavras--decodificado em leis novas e estimulantes: a lei Seção 504 ("Section 504") e a lei IDEA.
Hoje, em 2002, o poder de uma comunidade forte, unido a leis vigorosas, faz-se evidente em Massachusetts. Este ano, o 30.o aniversário da lei Capítulo 766, a nossa lei de educação especial do estado, fornece uma oportunidade para indicar o progresso incrível que esta lei revolucionária tem proporcionado num período de tempo relativamente curto, em Massachusetts e, igualmente, através do país. Apesar de reconhecermos nosso sucesso, temos, contudo, de reconhecer também os desafios e as barreiras que esta geração de crianças portadoras de deficiência tem a encarar pela frente.
As barreiras são enormes.
Primeiro, cortes maciços nos orçamentos local e estadual põem os serviços essenciais em perigo. Infelizmente, neste clima fiscal também sabemos que, provavelmente, faremos aumentar o bode expiatório com relação às crianças com necessidades especiais, pois culparão os custos para o ensino desses alunos pelos problemas do distrito escolar ou da cidade. Porém, sabemos que o problema real consiste nos fundos inadequados dos governos estadual e federal, bem como das suposições indizíveis de que fornecer programas dispendiosos para crianças com necessidades especiais "não tem valor".
Esta geração também tem de encarar os desafios do MCAS, o teste de graduação estadual para os alunos da 10.a série. Os alunos portadores de deficiência têm sido reprovados neste teste a taxas alarmantes. Bem mais da metade dos alunos portadores de deficiência da High School (colegial) tem sido reprovada, mesmo após o re-teste. As taxas de reprovação têm sido ainda mais alarmantes nas áreas urbanas: em Boston, 90% dos alunos portadores de deficiência da 10.a série foram reprovados neste teste no ano passado; em Springfield, 98%; e em Holyoke, 99%. Estas taxas de reprovação são inaceitáveis. Toda uma geração de crianças portadoras de deficiência está em risco, sendo privada dos diplomas necessários para a busca de oportunidades e vocações após o ensino secundário.
As crianças têm, ainda, de encarar as revisões feitas em nossas leis de educação especial do estado. As mais recentes provisões que foram instituídas exigirão uma defesa e uma vigilância determinadas e contínuas para garantir que as escolas não usem o estatuto, recém mudado, para rebaixar as expectativas e cortar os serviços vitais. Eu não tenho dúvidas, entretanto, que sobrepujaremos os desafios que estão à nossa frente. Graças aos esforços de pais e dos defensores, nossas leis permanecem fortes, nos dando as ferramentas de que precisamos para exigir a eqüidade que capacita as crianças a alcançar o seu potencial. Como antes, precisamos continuar a insuflar mais vida nestas leis recentes. Ainda hoje, temos miríades de histórias de sucesso que demonstram o que é possível: sabemos que, quando as barreiras são removidas, as crianças podem alcançar o seu potencial, exceder as expectativas, obtendo êxito nas comunidades inclusivas.
Nossa comunidade de defesa é ampla e poderosa: Somos uma organização de pais, de portadores de deficiência e de defensores e representantes de crianças; de interesse público e de advogados privados; de consumidores organizados; de organizações de professores; de aliados fiéis na política; e de infiltrados nos distritos escolares e nas agências estaduais. Ainda que eu esteja profundamente agradecida com esta Premiação, é, verdadeiramente falando, a fortaleza de todos nós--indivíduos e organizações--trabalhando em colaboração que precisa ser reconhecida. Nossa força e a força de nossas leis me deixam confiante de que estes novos desafios serão superados.
Mais substancialmente, a fundação de nosso poder reside na fortaleza de nossos alunos portadores de deficiência e de seus pais. Cada criança deficiente, assim como sua mãe ou seu pai, são pioneiros em sua própria comunidade. Dia após dia e ano após ano, os pais e os alunos pavimentam o caminho, mudando, devagarzinho, as atitudes e as práticas dos professores, dos estudantes e das comunidades. Toda semana é algo diferente--lutando por uma instrução de leitura apropriada ou por apoios comportamentais, a insistência nas adaptações para que uma criança participe do jogo escolar, abrindo as portas para que o aluno possa participar de um curso AP--tudo para garantir que as crianças tenham um campo nivelado e para erradicar as baixas expectativas que as crianças com todos os tipos de deficiência ainda enfrentam. Às vezes é preciso uma batalha jurídica. O mais comum, porém, são os alunos e seus pais fazendo essas mudanças diárias, incansavelmente, que criarão uma reforma duradoura. Eu tenho a sorte e o privilégio de fazer parte de uma comunidade tão forte, tão poderosa e tão amável.
Support Group
in Portuguese
The support group for Portuguese-speaking families in Massachusetts,
supported by Project COEP (Community Outreach and Empowerment Project),
is open to all families with children with disabilities and also to youth
and adults with disabilities. Project COEP is funded by the Boston Foundation
and operated by staff at the Federation for Children with Special Needs.
Once a month, Portuguese-speaking families who have family members with
disabilities, meet at the Federation in Boston for lunch, exchange information,
learn about opportunities and participate in social activities. In December
2001, support group members enjoyed a "festa" with a wonderful dinner provided
by Canestaros, a local restaurant. Plans for 2002 include election of administration,
social events, informational workshops and the completion of a Directory
of Information by Members and Collaborators of the Portuguese Speaking
Special Needs Community. For more information please contact Sandy Blanes
or Rhea Tavares at 617-236-7210, ext. 144.
Grupo de Apoio
em Português
O grupo de apoio para os falantes da língua portuguesa no estado
de Massachusetts, com o patrocínio do Projeto COEP -- Community
Outreach and Empowerment Project -, está aberto a todas as famílias
que tenham crianças, jovens e adultos portadores de deficiência.
O Projeto COEP é fundado pela Boston Foundation e operado pelo quadro
de pessoal da Federação para Crianças com Necessidades
Especiais. Uma vez por mês, as famílias se reúnem na
Federação, em Boston, para trocar informações,
saber das novas oportunidades e participar nas atividades sociais. Esses
encontros têm duas coisas em comum: a necessidade especial e a língua
portuguesa. Independente de qual seja a necessidade especial, os falantes
de língua portuguesa de todo o estado estão partilhando um
lanche e informações sobre as suas deficiências e suas
necessidades. Ao final do ano 2001, os membros do grupo de apoio se divertiram
numa festa em que o jantar foi fornecido por um restaurante local, o Canestaros
Restaurant. Dentre os planos para o ano 2002 estão incluídos:
eventos sociais, eleição da administração,
palestras informativas e, ainda, a ealização de uma Central
de Informações dos Membros e Colaboradores da Comunidade
de Falantes da Língua Portuguesa com Necessidades Especiais. Maiores
informações podem ser obtidas com Sandy Blanes ou Rhea Tavares,
no tel. 617-236-7210, ramal 144.
Support Group
in Spanish
Project COEP (Community Outreach and Empowerment Project), is a unique
parent support project, funded by the Boston Foundation and operated by
the Federation for Children with Special Needs. Staff of the COEP Project
coordinates support groups for families of children with disabilities.
One group, "Familias Latinas Unidas por el Síndrome de Down," (Latino
Families United for Down Syndrome) is dedicated to supporting and empowering
families of children with Down syndrome. The group meets one Saturday a
month from 10 am -- 12 noon at the Federation in Boston. For more information,
please call Diana Rocha at 617-236-7210, ext. 171.
Grupo de Apoyo
en Español
The Community Outreach and Empowerment Project (COEP), patrocinado
por Boston Foundation en La Federación para Niños con Necesidades
Especiales apoya al grupo "Familias Latinas Unidas por el Síndrome
de Down." El grupo se dedica a apoyar y aumentar el liderazgo de las familias
que tienen niños con el síndrome de Down. Este grupo se reune
un sábado al mes, de 10 a.m. a 12 p.m. en Boston. Para más
información, llame a Diana Rocha al 617-236-7210, ext. 171.
Summer is finally here, and with it comes vacations, mishaps, day trips, mishaps, trips to the beach, mishaps . . . well you get the picture. Summer is an opportunistic time for accidents, big and small. If you can do some preparation for "just in case," you will make life much easier for yourself and your child with special needs.
The following ideas have worked for other families. Remember not every child is the same; you can adapt these ideas to best meet your child's and family's needs.
1. If your child takes prescription medication, make sure that you bring the medication(s), along with written copies of the prescriptions. This way, if the medications somehow get lost, you will have the information with you to get a refill. If you don't have a copy of the written prescription, make sure to carry the name and phone number of your pharmacist, as s/he can always transfer the prescription to a pharmacy near you.
2. If your vacation will take you out of state, and your child has durable medical equipment needs, find out ahead of time if there is a rental company near where you will be staying. Sometimes renting equipment can be easier than carrying it all with you, and if you forget some of your child's medical supplies, you will have a local contact. Doing your homework before hand can help avert an untimely end to your vacation. Also, check with your insurance company to see if you need pre-approval for out-of-state rentals.
3. If traveling by car, make a simple information sheet that tells your child's name, age, disability, and list of medications. If your child is non-verbal, has behavior issues, or has any other disability, which might hinder emergency efforts, make sure to include that information. Take that sheet, fold it, and slide it into a small magnetic picture frame and attach it to something metal on your dashboard with a sticker on the front that says EMERGENCY INFORMATION FOR MY CHILD. This will be very effective if for some reason you cannot communicate your child's needs in an emergency.
4. If you are traveling out of state, call Family TIES before you go, 1-800-905-TIES, and ask for the phone number of the Parent-to-Parent organization for the state you will be visiting. If you end up at the hospital or in the middle of an emergency for your child, you'll have a way to contact another parent of a child with a disability that can help you "through the system" and give you support. If you are vacationing here in Massachusetts, there are Family TIES parent coordinators in each region of the state, along with many trained support parents you can call. Keep the number (1-800-905-TIES) with you in case you need support during one of those "summer mishaps" or at any other time. Most importantly STAY SAFE, BE PREPARED, and have a wonderful summer!
Through the Looking Glass, a national resource center for parents with disabilities is a community-based, non-profit organization. Their staff is comprised of various specialists who have diverse cultural backgrounds, and nearly 80% of the 40 staff members either have a disability, or have a child or another family member with a disability. They are conducting a nationwide survey to learn more about families where a parent with a disability is raising a teen aged child. The National Institute on Disability Research and Rehabilitation, part of the U. S. Department of Education, is funding this project.
What do we mean
by disability?
Disability can involve physical, visual, systemic, hearing, cognitive,
learning, developmental and/or mental health issues.
Why are we conducting
research?
Although there are over 10 million families in which one or both parents
have a disability, relatively little is known about these families' experiences.
Who can participate?
Parents with disabilities, Deaf parents, and their teen aged children,
11-17 years old, are welcome to participate.
How can you get
involved?
If you are a parent of a teen aged child, 11-17 years old, and have
a disability, please fill out a survey. Your teen is also welcome to participate,
and will receive $5.00 as a 'thank you' for their participation. The surveys
are available in a variety of formats. You can fill it out on-line at our
website (contact information is below), or over the phone. Surveys are
available in Spanish and Deaf parents can participate in a face-to-face
interview in ASL if they live in or near the following cities: San Francisco,
Seattle, Santa Fe, New York, Kansas City, (Kansas) or Washington, D. C.
The deadline is August 31, 2002.
For more information
contact:
Nancy Freed
(510) 848-1112 ext. 174
Voice: (800) 644-2666
TTY: (800) 804-1616
Email: tlg@lookingglass.org
Website: www.lookingglass.org
KASA (Kids As Self Advocates) is an organization created by youth with disabilities to educate society about issues concerning youth with a wide spectrum of disabilities and special health care needs. They believe in supporting self-determination, creating support networks and proactive advocacy for all youth with disabilities in our society. Currently they host a list-serve and a website and are always looking for new members. This is a wonderful opportunity for our children to learn how to advocate more effectively for themselves and to make connections across the country with their peers.
For more information on how to get your child involved call Julie Sipchen, KASA Project Director, at (773) 465-3200 or check out their website at www.fvkasa.org.
Would you like to offer support to another parent who has a child with a disability similar to your child's?
Have you had a successful experience that might help another family?
Then call your Family TIES coordinator at 1-800-905-TIES and find out how easy it is to connect with and support another parent. We are currently offering free support parent trainings in each region of the state.
If you'd like to connect with a family who shares a similar situation as your family, please call Family TIES and we'll find a match for you. 1-800-905-TIES
On May 10, 2002, The Federation for Children with Special Needs in Boston presented U.S. Senator Jim Jeffords of Vermont with the Martha Ziegler Founder's Award for his commitment and tireless efforts to fully fund IDEA. The Federation recognized the Senator's commitment and dedication to individuals with disabilities. He even switched from the Republican to Independent party, partly because of this Administration's unwillingness to fully fund IDEA.
As Senator Jeffords was unable to personally accept his award at the Federation's Gala, Maureen Mitchell accepted on his behalf. On May 15, Janis Connallon, Family Voices Policy Staff, Stephanie Harlow and Maureen Mitchell, the State Coordinators for Virginia Family Voices, Ann Mitchell, Julie Yannis, policy analyst for Inclusion Research Institute, and her daughter Brielle, as well as Johnette Hartnet, a JP Kennedy Fellow, had the pleasure of presenting Senator Jeffords with his award.
Senator Jeffords was pleased to have been honored by the Federation and to have the distinction of being the first non-Massachusetts person to have received the Martha Ziegler Founder's Award. He was also touched by our personal stories, our thanks and kind words.
This year, it's time once again for Congress to reauthorize IDEA. Let's work together with our congressional members in hopes that Congress will fulfill their promise to fully fund IDEA. Let your voice be heard! The U.S. House of Representatives has created an on-line suggestion box so parents, teachers and interested others can share their ideas about and suggestions for improving and strengthening IDEA. Visit www.edworkforce.house.gov and click on the link for Great Ideas.
Mel Levine, M.D., director of the Center for Development and Learning and founder of the All Kinds of Minds Institute, is one of the best-known education experts and pediatricians in America today. In his latest publication, A Mind At A Time, Dr. Levine shows parents and teachers how to work with children and identify their strengths and weaknesses. They can then use this knowledge to develop strategies to work through a child's weaknesses and promote successful learning.
For more information about this book (Simon & Schuster) and the Developing Minds Multimedia Library (a WGBH Production), visit the National Professional Resources site at www.nprinc.com.
by Robert A. Naseef, Ph.D.
Sometimes it seems like yesterday, since my oldest child, and only son, Tariq, was a seemingly normal, happy toddler. At 18 months he was just beginning to speak and had a small but useful vocabulary. Then autism struck, and life has never been the same.
When I first glanced at the cover of TIME featuring a boy with autism, I shuddered. The boy's hands and his far away look brought me back 20 years. That was my baby's hand at 2, and now at 22. A knot formed in the pit of my stomach. My head began to spin. Later, after I read the article in its entirety, and I felt grateful to TIME for bringing the complex issues around the causes of autism, the exploding number of new cases, the impact on families, the status of research, and the need for intensive treatment to the fore.
It is no longer difficult to find people who have been touched by autism. I couldn't help but notice that two of the first person accounts in the article came from the TIME family-arts reporter and parent, Amy Lennard Goehner, and Karl Taro Greenfeld, the editor of TIME ASIA, has a brother with autism. Everyone in the family unit is deeply affected. As Greenfeld's father wrote so poignantly in A Child Called Noah in 1970, "There is a strain on any marriage whenever a baby is sick. And we always have a sick baby. . ."
I am consoled by the reality that people with autism teach the rest of us profound and spiritual lessons in acceptance and in honoring the diversity of the human condition. Yet there are things we must change. When my son was diagnosed, the incidence of autism was widely cited as 5 in 10,000. Nobody I knew had any knowledge or experience of it. It was a very lonely and dark time. Now we are told that for various and mysterious reasons the incidence is more like 1 in 250. So many children have been affected, and so many families have had their lives disrupted. I hardly feel alone anymore . . . but I never wished for this much company.
The money being spent on research is a tiny fraction of what is needed. We need answers about why certain parts of the country, such as areas in California and New Jersey, have much higher incidences than other areas. We need to understand more about the neuroscience of autism, so effective medications can be developed to reverse the condition regardless of the cause.
Equally urgent is the need for state of the art services for children and their families. Research has demonstrated that early and vigorous treatment can make a huge difference in the outcome for individuals affected by autism and other developmental disorders. Alarmingly, a two-year-old child with autism gets only a few hours of home-based services per week, while experts recommend 30 to 40 hours of programming. Parents shouldn't have to beg and scream for services when their child enters public school. Many of these schools are poorly funded, especially in the inner cities, and have inadequately trained staff. Additionally, there are few or no opportunities for children with autism to develop social skills through interactions with their peers.
It is heartening to have the issues in the public focus. Now let's do our best as a society to find solutions--before it's too late for someone else. Dr. Naseef, a psychologist, is the author of Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child with a Disability. For more information about this book, visit www.specialfamilies.com.
You can read the TIME cover story at www.time.com/time/covers/1101020506/.
by Andrea Watson
Project Coordinator, Parents for Residential Reform
Parents of children who receive special education services should be aware that Program Quality Assurance Services (PQA at the Massachusetts Department of Education (DOE) now has its own web site, www.doe.mass.edu/pqa. It has up-to-date information on MCAS, School Accountability, Compliance and Monitoring, and the No Child Left Behind Act. This site now provides vital information on Massachusetts's public schools' special education departments and on private 766-approved schools through its online program review reports. These reports are quite informative, covering quality of education, health, welfare, safety, teacher and staff certification, and much more.
Program review schedules are posted online as well, giving parents information as to when a particular school system or 766-approved private school will be reviewed. This information is critical for parents as the review process allows for parents and others to participate. Contact information is given for the liaison leading the review process. Remember that, although a program might not look good on paper, it is important to ask questions of the PQA staff and the program to learn how issues were resolved. Use these program reviews as a tool in making a decision, but not as the only tool.
As parents and consumers, it is important also to have information on how to file a complaint. The PQA site has a complete description of its Problem Resolution System. The site also provides information on PQA's roles and responsibilities, a staff directory (which includes email addresses), special approvals and notice requirements, and a section with crucial decisions and Administrative Advisories.
It is exciting to think that today being a consumer means getting much-needed, accurate information! The value of this information is great, especially since in some instances, we are looking to place the lives of our children in others' hands not only for education and care during the day but at night as well.
Parents for Residential Reform has a direct link to the PQA site for easy access as well at www.pfrr.org. To schedule a workshop for the fall or winter of the next school year call us at 1-800-672-7084 or email pfrr@fcsn.org anytime.