NewsLine
Winter 2003,
Volume 24, Number 1
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by Robert K. Crabtree, Kotin, Crabtree & Strong, LLP
Robert K. Crabtree is a founding partner of the Boston law firm of Kotin, Crabtree & Strong, LLP, a general practice firm. Among other areas, Mr. Crabtree concentrates in special education law with his partners, Lawrence Kotin, Richard Howard, and Eileen Hagerty. All frequently lecture and write on issues in education law.
On January 1, 2002, Massachusetts changed the standard governing IEPs from "maximum possible development" to "free appropriate public education" ("FAPE")--the standard under IDEA. How has FAPE been interpreted and what difference, if any, has the change made to students in Massachusetts?
A very thoughtful BSEA (Bureau of Special Education Appeals) decision, issued in July 2002, has helped clarify how FAPE will be understood and applied by the BSEA. In Re: Arlington Public Schools, 8 MSER 187 (2002). In Arlington P. S. the hearing officer examined the new standard and, in so doing, provided a concise primer on special education law.
According to this decision, FAPE "requires the opportunity for meaningful educational benefit or meaningful educational progress" leading to "demonstrable improvement" in the "various educational and personal skills identified as special needs." Arlington P. S. Progress "should not be evaluated in a vacuum, but rather in the context of the potential of the particular student to benefit from the educational services." The hearing officer notes that "the identified purpose of the special education regulations is ‘to ensure that eligible Massachusetts students receive special education services designed to develop the student's individual educational potential.'" He also notes that "progress may be determined through measurable goals in an IEP."
Further elaborating, the hearing officer reminds the reader that FAPE requires a school district to provide "an educational program that is designed to meet the student's unique individual needs . . . and that addresses all of a child's special education and related services needs, whether they be academic, physical, emotional or social."
Finally, he states that FAPE requires that services be provided, to the maximum extent possible, with non-disabled peers, and that a student with an IEP participate as fully as possible in the general education curriculum. Thus, he says, FAPE requires that "the educational standards applicable to students with special needs in Massachusetts include the learning standards established through the state curriculum frameworks."
In Arlington P.S. the parent contested an IEP placing her child mostly in a substantially separate classroom. Despite the student's learning disability, the parent believed that she could succeed in the mainstream with supports. The BSEA found for the district, saying: "On balance . . . the benefits of a more restrictive environment (with the specialized, self contained language arts and math) . . . far outweigh the benefits of a fully-mainstreamed curriculum [for this student]."
Whatever readers may feel about the outcome for this student, the discussion in this decision gives FAPE real meaning. It emphasizes the requirement to develop a student's potential and confirms that a student with disabilities should be taught, where possible, the same information and skills that non-disabled peers are taught. Also heartening is the BSEA's evident willingness in appropriate cases to allow the need for more intense services to outweigh the principle of mainstreaming. Finally, it is excellent to see the hearing officer emphasize that FAPE requires attention to the full range of a student's needs, "whether they be academic, physical, emotional or social."
In this decision, the BSEA joins the Massachusetts DOE in confirming that FAPE does not mean a reduction of commitment or services. In a memorandum issued before the change to FAPE (Administrative Advisory SPED 2002-1), DOE said that FAPE requires "meaningful educational progress" through IEPs that are "tailored to meet the unique needs of [each] student." DOE also highlighted "the Commonwealth's commitment to assist all students to reach their full educational potential" and pointed out that in states where FAPE has always been the standard, "courts have ordered school districts to provide an extensive array of special education services, including private day and residential placements as well as related services."
A year ago, we expected litigation over FAPE and hoped that the change would have little impact on the quality and quantity of services.
Litigation has increased somewhat over the past year, inspired to some degree by the hope that the BSEA would support a reduction of services under FAPE. As news of strong interpretations like that in Arlington P.S. spreads, however, the stream of such litigation should slow. If the BSEA continues to interpret FAPE as in Arlington P.S., the change of standard should not, by itself, lead to any reduction in services.
We believe that recent litigation has been stimulated by other factors along with the change to FAPE, however, and that those other factors pose a far greater risk to students with disabilities. Those other factors include:
(1) The undermining of parents' ability to recover attorney's fees, triggered by the U. S. Supreme Court's decision in Buckhannon Board & Home Care, Inc. v. West Virginia Dep't of Health and Human Resources, 532 U.S. 598 (2001). That case held that parties are not entitled to recover attorney's fees under civil rights statutes until there is an order on the merits of a case. One local magistrate has held that Buckhannon applies to attorney's fees claims under IDEA. If so, districts can resist even the worthiest claims in litigation and provide what the parents want at the last minute without having to reimburse the parents' attorney's fees. (Note, however, that courts have split on the question whether Buckhannon applies to IDEA, and the issue remains yet to be conclusively resolved.)
(2) The economy and politics. Recently, the state Department of Education announced that it lacks funds to pay its full share for residential placements. This is just the most recent sign of how the economy can undermine special education. Government budgets have been decimated by a poor economy and repeated tax cuts. Worse is yet to come, as state aid to cities and towns will apparently suffer deep cuts this and next year. Special education is a tempting target for cuts, even though it is an entitlement under law. Ambiguous standards and professional disagreement about methods to address disabilities create an environment in which services can be reduced to save money, leaving parents to fight the reductions only if they have the ability to do so. Smaller budgets put parents of non-disabled students at odds with their neighbors over how to allocate funds between regular and special education programs and between education and other necessary services.
What then? Parents and advocates cannot give up but must pick their battles with an understanding of the forces arrayed against services. We need to be alert to the political, economic and attitudinal factors that jeopardize resources and programs, but we also need to acknowledge the occasional good news. As we see in Arlington P.S., there are legal principles that, if used well, can improve students' programs. We need to fight, when appropriate, for services for individuals, but we also need to educate our neighbors and politicians rationally, calmly and persistently, about the long-term costs of not serving children with disabilities and the benefits of meeting their needs well--of providing, that is, FAPE in the best sense.
IDEA, or the Individual with Disabilities Education Act, is up for reauthorization (renewal) this year. This Federal legislation, first enacted in 1975, ensures the rights of children with disabilities to a free appropriate public education (FAPE) in the least restrictive environment. As part of reauthorizing IDEA, the President wants to change IDEA so that it is consistent with his No Child Left Behind Act (NCLB). He is also recommending that Congress approve significant changes to IDEA.
There are advantages to bringing IDEA and NCLB into alignment. For example, children with disabilities would be considered general education students first and there would be a single accountability system for all children. However, the Disability Rights Education and Defense Fund (DREDF), an alliance of adults with disabilities and parents of children with disabilities, has raised concerns that current proposals to amend IDEA may weaken or compromise the civil rights of students with disabilities. These concerns include proposed changes in the following areas:
DISCIPLINE: DREDF is concerned that proposed changes to the language in IDEA governing school discipline for students with disabilities will damage procedural safeguards now provided by IDEA. Currently, students' behavioral issues are to be addressed as educational issues when the student's behavior interferes with his or her ability to learn or with other students' learning. Additionally, IDEA discipline provisions already allow school officials to discipline students whose behaviors cause problems. As currently written, the discipline provisions in IDEA do not adversely affect school safety and climate.
PAPERWORK REDUCTION ACT OF 2002: This Act proposes to reduce the paperwork burden associated with special education services by simplifying IEP (Individualized Education Program) documents, procedural safeguards notices, and the reporting requirements for prior written notice. It also proposes that IEPs be reviewed on a 3-year cycle instead of the current annual review. These proposed changes mean that parents of students on IEPs may not receive progress reports at the same intervals as other student. They would eliminate safeguards that ensure that children on IEPs are making measurable progress towards their goals. The proposed Act also fails to address how parents would be informed of their rights to additional meetings.
VOUCHERS: Vouchers are being considered as a way to ensure that families whose children are not making educational progress could chose another school for their child. However, the IDEA already states that when a public school district is unable to meet a child's educational needs, public funds will be used to send a student with disabilities to a private school.
FUNDING: In addition to the concerns cited above, laudable efforts are being made to increase funding for IDEA. Currently, funding for IDEA is discretionary, which means that Congress can increase or decrease appropriations each year. The original IDEA statute proposed that the federal government pay 40% of the costs associated with IDEA; this level of funding (often referred to as "full funding") has never been met at the federal level. Full government funding would mean a real commitment to education and would help school districts meet the costs of education all children so that "no child [would be] left behind."
Congratulations!
State representative Marie St. Fleur of Boston has been appointed Chair of the Education, Arts and Humanities Committee of the legislature.
Governor Romney has re-appointed Harry Spence as the Commissioner of the Department of Social Services as well as Assistant Secretary, Children, Youth, and Families at the Executive Office of Health and Human Services (EOHHS).
Commissioner Gerry Morrissey will continue at the Massachusetts' Department of Mental Health and has been newly appointed as Assistant Secretary,Disability and Community Services at EOHHS.
We welcome Christie Ferguson as the new Commissioner of the Massachusetts' Department of Public Health and Assistant Secretary, Health.
by Richard Robison, Executive Director Federation for Children with Special Needs
The Proof is in the Pudding. At least that is what my grandmother used to tell me. Perhaps she was smart enough to know that someday that would be the way the government measures success. It seems that everything we do at the Federation these days requires us to report our successes in terms of outcomes. In other words, the process itself is not enough--concrete benefits must be the result. When it comes to students with disabilities, the outcomes that result from a high quality education, access to health care, and full participation in their own communities are what count.
In recent weeks, two examples of successful outcomes have come to my attention. The first involved a caller to the Federation. She was a community college student who was doing research on disability issues. She called the Federation seeking more information on Bipolar disorder for a paper she was preparing for class. The call seemed a bit unusual, so the staff member who received it asked for some clarification. The caller herself has a disability and she knew to call the Federation because she knows the Federation can help, and her father works there! Indeed, while I was out of town on business, my own daughter, who has Down syndrome, was doing research for a class report. Since I wasn't around, she sought the assistance of the Federation staff to meet her deadline. I am pleased that the Federation was able to assist this new kind of caller, and that the paper was submitted on time. You see, the proof is in the pudding!
A second example was reported in the Boston Globe in December 2002. The story identified another young woman with Down syndrome who passed the state's MCAS exam on the first try. This, of course, is a tremendous accomplishment on her part and speaks to the power of a successful partnership between home and school. It should not be misinterpreted that this accomplishment is anything more than a tremendous accomplishment by one student. However, it speaks to the possibilities. With the advent of high standards, many people these standards could never work for students with disabilities. But now, though in limited examples, we can see that progress is being made. Across the nation, similar experiences are occurring. Students with disabilities are demonstrating some of the biggest gains of all students since the beginning of the education reform efforts of the early 90's. The proof is in the pudding.
Yet, even with phenomenal successes, we know there are many more students with disabilities, from other language groups, or of minority status who have yet to realize these promises. While we applaud early successes, the job has only just begun. In these days of economic stress it will be tempting to give up too soon or to claim too much money is being spent unnecessarily on special education instead of general education. In this era of No Child Left Behind, we cannot give up or give in until the job is complete. You see, the proof is in the pudding!
by Mary Loughlin, Federation Information Specialist
My Child's IEP is not working.
What should I do?
There are two ways in which an Individualized Education Program (IEP) may be considered to be "not working:" Either (1) the supports or services are not being delivered as written, or (2) the supports or services are not appropriate to meet the child's needs.
Many parents voice concerns about their child's IEP at some point during the school year. This is not surprising when one considers that many Team meetings are held in the spring to plan and develop a child's IEP that will be implemented in the fall. There is no crystal ball to guide the process. Team members rely on information gathered from a variety of sources to pinpoint the child's needs, such as parent/student input, the child's educational history, present level of performance, evaluation and test results and potential. All relevant information must be considered to decide what supports and services will best meet the unique needs of the child to provide a free, appropriate public education (FAPE). It is the Team's job to use these findings to develop an IEP with clear, measurable, observable goals that will help the child make effective progress in the general curriculum. That is, to learn what other students of the same age are learning. An accepted IEP serves as a contract between the parents and the school. It does not guarantee that the child will meet the identifiable goals but represents the expected outcomes, based on the information available at the time of the meeting.
What action should a parent take when the IEP is not working? Begin by contacting the school and voicing your concern to the appropriate person. Usually this is the child's teacher, but it might be a service provider, principal or the special education director depending on the issue and your relationship with school personnel. Sometimes issues can be quickly resolved in this way.
Think about what "not working" means to you so you can clearly explain the problem. Review your child's current IEP. This is a useful tool to help you decide whether all the supports and services written into the IEP are in place and being delivered as agreed. It will help you track your child's progress by monitoring the measurable goals, objectives, and benchmarks. If you think changes should be made, what facts do you have to support your view? Facts may include crucial information about the child that was overlooked, downplayed, or simply not available to the Team at the last meeting. Your observations of your child are also important evidence.
If your concerns cannot be resolved informally, ask the IEP Team to reconvene. Put this request in writing and keep a copy for your records. Parents have a right to request a Team meeting any time they feel change is needed and the Team will meet as many times as necessary to ensure that the child receives FAPE. The meeting to review the child's IEP and address the concerns must be held within a reasonable time. The Team may decide added supports, strategies or interventions are needed, and an addendum reflecting the changes will be written and attached to the current IEP. No changes can be made without parent consent.
by Bill Henderson, Public School Principal & Federation Board Member
A year ago, I participated on a panel on inclusion organized for journalists who work in the New England area. A parent advocate on the panel made the point that the inclusion of children with disabilities was, for parents, a civil-rights issue. A representative from a teacher's union, also on the panel, remarked that talking about civil rights was not helpful because inclusion is a practical matter. I spoke up and mentioned how I found it interesting that a leader from that same union had argued eloquently on my behalf for my "civil rights for inclusion" as an employee with a disability.
20 years before that panel presentation, I had gone to the union to ask for advice. I had been a fairly successful teacher in the Boston Public Schools, but because of retinitis pigmentosa, I started having problems seeing. An eye specialist had already advised me to "get out of education," and an education administrator had suggested that I "look into disability retirement." The union leader was very adamant and supportive. He told me that I had a right to a job in Boston. Together with school department officials, we met and discussed a range of options with possible accommodations.
The union had clearly treated my inclusion as a civil right first and foremost. The primary consideration was that I had a right to a job in education in the Boston Public Schools. Then came the practical matters. I had to make some adjustments; I had to learn some new techniques. The School Department had to provide some accommodations. I still had to perform the essential responsibilities of my job, but my right to continue as an educator was definitely the first consideration.
Why is it that so many school professionals don't give children that same kind of consideration? There are still far too many parents who are being told by some teachers, some principals, some psychologists, and some special education administrators that their children cannot be included in classrooms with their nondisabled peers, but rather that they have to attend some special program or some special school where their needs can supposedly be better met. Furthermore, these exclusionary comments are often used referring to very young children who have yet to attend school or to children who are in regular education classrooms without any supports other than the regular education teacher.
The Individuals with Disabilities Education Act (IDEA 97) does guarantee appropriate supports to students with disabilities regardless of setting. The law also presumes that the first placement option considered for each disabled student should be the school/classroom the child would have attended if not disabled; and that appropriate supplementary aids and services should be provided to support such placement.
Educators who recommend a child's placement in a substantially separate classroom without first considering the general education classroom and the provision of services in that classroom are not following IDEA 97. Now, many will argue, and rightfully so, that not every child is successfully included. Some children with disabilities have not made progress in general education classrooms even with supports and some have significantly disrupted the learning of others. Such problems occur due to many factors, which may or may not be caused by the child. IDEA 97 clearly recognizes the right and process for sending students with disabilities to more restrictive placements. However, such placements should always be the second consideration, not the first. Too many children who have disabilities are never given a fair opportunity.
Including students with disabilities is a civil right first and foremost. Practical matters are important but should be explored only after recognizing and honoring this right.
by Bill Henderson, Director de una escuela pública y miembro de la Junta Directiva de la Federación.
Hace un año participé en un panel sobre la inclusión, el cual fue organizado por periodistas que trabajan en el área de Nueva Inglaterra. Un padre de familia que integraba el panel dijo que la inclusión de niños con discapacidades era para los padres de familia un asunto de derechos civiles. El representante de la unión de profesores en el panel dijo que hablar de derechos civiles no era de gran ayuda, porque la inclusión era un asunto práctico. Yo hablé y dije que me parecía muy interesante que un líder del mismo gremio de profesores, años atrás habia defendido elocuentemente "mis derechos civiles por la inclusión" como empleado con discapacidades.
Veinte años antes de la presentación en el panel, fui a la unión de profesores a pedir consejo. Hasta ese momento había sido un exitoso profesor en las escuelas públicas de Boston, pero por causa de una "retinitis pigmentosa" empecé a tener problemas para ver. Un especialista de los ojos me había aconsejado "sálgase de la profesión de enseñar" y un administrador de la educación me sugirió que "tomara la jubilación por incapacidad física". El lider de la unión de profesores fue bastante amable y colaborador conmigo. El me dijo que yo tenia el derecho a trabajar en Boston. Juntos con los oficiales del departamento de la escuela discutimos las diferentes opciones a seguir con las acomodaciones posibles.
La unión de profesores claramente trato mi inclusión como un derecho civil. Lo que primero que se tomo en cuenta fue mi derecho a trabajar en la educación en las escuelas públicas de Boston, después se trataron los asuntos prácticos. Tuve que hacer algunos ajustes y aprender nuevas técnicas. El departamento de escuelas tuvo que darme algunas acomodaciones. Hasta hoy continuo realizando las responsabilidades esenciales de mi trabajo, pero mi derecho a continuar como educador fue definitivamente la primera consideración que se tomo en cuenta.
¿Porque es que tantos profesionales en las escuelas no dan estas mismas consideraciones a los niños? Algunos profesores, directores, sicólogos y administradores de educación especial les han dicho a padres de familia que sus hijos no pueden ser incluidos en los salones con sus compañeros sin discapacidades, en cambio, ellos tienen que asistir a un programa o escuela especial donde sus necesidades seran, supuestamente, mejor atendidas. Además este tipo de comentarios de exclusión son usados frecuentemente para referirse a niños pequeños que están por ir a la escuela o a niños que se encuentran en un salón de educación regular sin ningún apoyo excepto el del profesor de educación regular.
El Acta de Educación para Indivíduos con Discapacidades (IDEA 97) garantiza apoyos apropiados para todos los estudiantes con discapacidades sin importar la ubicación. La ley también presume que el primer lugar donde cada estudiante con discapacidades debe ser ubicado es la escuela/salón de clases, donde el niño iría sino tuviera una discapacidad. Además el estudiante debe de recibir las ayudas adicionales apropiadas y los servicios que apoyen esta ubicación.
Los educadores que recomiendan que la ubicación de un niño debe ser en un salón de clase separado sin considerar primero el salón de clases regular y la provisión de los servicios apropiados en este, no están siguiendo la ley IDEA 97. Muchos discutirán, y con razón, que no todo niño es exitosamente incluido. Algunos niños con discapacidades no han tenido progreso en el salón regular de clases a pesar de los apoyos y servicios, algunos de ellos han interrunpido significativamente el aprendizaje de otros. Estos problemas ocurren por muchas razones, las cuales pueden o no ser causadas por el niño. La ley IDEA 97 claramente reconoce el derecho y el proceso a seguir para enviar a los estudiantes con discapacidades a lugares más restrictivos. Pero tales lugares deben ser siempre la segunda opción, no la primera. A muchos niños con discapacidades nunca se les da una oportunidad justa de ser incluidos.
Incluir a los estudiantes con discapacidades es primero y más que nada un derecho civil. Las situaciones prácticas son imortantes pero deben ser exploradas solamentes después de reconocer y respetar este derecho.
por Bill Henderson, Diretor de Escola Pública e Membro do Conselho Federação para Crianças com Necessidades Especiais
Há um ano atrás, eu participei de uma mesa-redonda sobre inclusão, organizada por jornalistas que trabalham na área de New England. Um defensor de pais levantou a questão, na mesa-redonda, de que a inclusão de crianças portadoras de deficiência era, para os pais, uma questão de direitos civis. Um representante do sindicato dos professores, também na mesa-redonda, observou que falar em direitos civis não era muito útil, pois a inclusão é um assunto prático. Eu tomei a palavra e mencionei como achava interessante que um líder daquele mesmo sindicato havia argumentado eloqüentemente, em meu favor, pelos meus "direitos civis à inclusão", como uma funcionária portadora de deficiência.
20 anos antes daquela mesa-redonda, eu tinha ido ao sindicato em busca de uma orientação. Tinha sido uma professora de sucesso razoável nas Escolas Públicas de Boston, mas, devido a uma retinite pigmentária, comecei a ter problemas de visão. Um oculista já havia me advertido a "cair fora da educação", enquanto um administrador educacional sugeriu que eu procurasse uma "aposentadoria por deficiência." O líder do sindicato foi de um apoio obstinado. Ele me disse que eu tinha direito a um trabalho em Boston. Em conjunto com os oficiais do departamento da escola, nos encontramos e discutimos uma variedade de opções com as adaptações possíveis.
O sindicato havia nitidamente tratado a minha inclusão, antes de mais nada, como um caso de direitos civis. A primeira consideração é de que eu tinha direito a um trabalho em educação nas Escolas Públicas de Boston. Aí vieram os assuntos práticos. Eu tinha de fazer alguns ajustes; tinha de aprender algumas técnicas novas. O Departamento Escolar tinha de providenciar algumas adaptações. Eu teria, ainda, de executar as responsabilidades essenciais de meu trabalho, mas o direito de continuar sendo uma educadora foi, definitivamente, a primeira consideração.
Por que será que tantos profissionais do ensino não dão às crianças o mesmo tipo de consideração? Ainda há muitos pais que são aconselhados por alguns professores, alguns diretores, alguns psicólogos e alguns administradores de educação especial que os seus filhos não podem ser incluídos nas salas de aula com os seus amigos não- deficientes, mas, ao contrário, que eles têm de freqüentar uma escola especial, ou ter um programa especial onde suas necessidades serão supostamente melhor atendidas. Ademais, estes comentários exclusivistas são geralmente usados com referência às crianças muito jovens, às quais ainda têm de ir para a escola, ou para crianças que estão na sala de aula de ensino regular sem nenhum tipo de suporte, exceto o do professor do ensino regular.
A Lei Educacional para Indivíduos Portadores de Deficiência (IDEA 97) garante, de fato, suportes apropriados para alunos portadores de deficiência não importando as condições. A lei também presume que a primeira opção de colocação para cada criança excepcional deve ser a escola/sala de aula que ela freqüentaria se não fosse portadora de deficiência; e, ainda, que auxílios e serviços apropriados suplementares devem ser fornecidos para facilitar esta colocação.
Os educadores que recomendam a colocação de uma criança numa sala de aula substancialmente separada sem, antes, considerar a sala de ensino regular e o fornecimento dos serviços nesta sala, não estão seguindo a lei IDEA 97. Agora, muitos argumentarão, e com razão, que nem todas as crianças são incluídas com sucesso. Algumas crianças excepcionais não têm feito progressos nas salas de ensino regular, mesmo com adaptações, sendo que algumas têm atrapalhado o aprendizado de outras. Estes problemas ocorrem devido a uma série de fatores, os quais podem ser, ou não, causados pela criança. A lei IDEA 97 claramente reconhece o direito e o processo de enviar alunos portadores de deficiência a colocações mais restritivas. Porém, tais colocações devem, sempre, ser a segunda consideração, não a primeira. São muitas as crianças portadoras de deficiência às quais nunca são dadas uma oportunidade justa.
A inclusão de crianças excepcionais é, antes de tudo, uma questão de direitos civis. Assuntos práticos são importantes, mas devem ser explorados apenas depois de se reconhecer e honrar este direito.
Dan Heffernan joined the Federation's board of directors in 1994 and has served as its board president since 1995. Dan received his law degree from Harvard Law School in 1987 and has worked as a trial attorney since then. Early in his career, he represented patients at Worcester State Hospital in civil rights and other cases. When his son Brian was born in 1990, the little something extra Brian has, an additional chromosome resulting in Down syndrome, was Dan's admission ticket to the community of families with members with special needs.
Dan represents plaintiffs in personal injury, professional malpractice, product liability and civil rights cases. An increasing portion of his legal work includes representing children and adults with disabilities in professional malpractice and civil-rights cases. In 2000, he tried and settled a civil-rights lawsuit against the City of Worcester on behalf of several families. That case, Laramee, et al. v. City of Worcester, emanated from years of abuse visited upon essentially non-speaking grade school students in separate classrooms by a teacher. The teacher was prosecuted, convicted, and imprisoned. During the criminal investigation, aides and a head teacher stated that they had seen the teacher hit students years earlier and reported it to the principal and others, but the teacher was not even disciplined about it.
Dan's current caseload includes cases involving medical malpractice on adults and adolescents with disabilities and civil-rights cases involving excessive restraints for children with disabilities. He also represents students with disabilities in special education cases. In March 2003, Dan joined the Boston law firm Kotin, Crabtree & Strong, and continues practicing in the area of personal injury, professional malpractice, civil rights and special education.
In March 2002, Dan and his wife Julie received the Dr. Allen C. Crocker Award of Excellence from the Massachusetts Down Syndrome Congress, in recognition of their commitment to advocacy and public awareness of the strengths and abilities of people with Down syndrome. Brian, and his sisters Magdalene and Evelyn, accepted the award on their behalf and addressed the MDSC's annual conference.
Throughout his time on the board of the Federation, Dan has been extremely impressed with the skill and commitment of the Federation staff and would like to take this opportunity to express his gratitude to them for their work.
Would your child like to go to summer camp this year? Check out some of the websites below for more information. Or, order the Federation's summer camp directory Summer Fun 2003 for detailed information about camps for children with disabilities.
Association of Independent Camps: Summer Camp Directory & Resource: www.independentcamps.com/intercamp
Camp Channel: Bringing Summer Camps to the Internet: www.campchannel.com/docs/campsearch.html
The CampPage Guide to Summer Camps: www.camppage.com
The Camp & Conference Homepage: www.camping.org
Camps for Children with Diabetes: www.childrenwithdiabetes.com/camps
Camp Search: The Search Engine for Camps: www.campsearch.com
Children's Oncology Camping Association: www.coca-intl.org
Diabetes Camping Association: Diabetes Camp Directory--U.S. Camps: www.diabetescamps.org/uscamps.html
Grown-Up Camps: www.grownupcamps.com
Kids' Camps: www.kidscamps.com
Therapy/Respite Camps for Kids: wmoore.net/therapy.html
The Down Syndrome Nutrition Handbook
A Guide to Promoting Healthy Lifestyles
By Joan E. Guthrie Medlen, R.D.,
L.D.
Woodbine House; ISBN: 1-890627-23-2;
paperback, 352 pages; $19.95
Book Review by Paula Rosenblum, Massachusetts Parent.
Most of us would agree that good health plays an essential role in living a full and happy life. For those of us concerned about the health of our children with Down syndrome, as well as relatives and professionals who may also play a role in their well being, this is a must-have resource for your bookshelf. Joan E. Guthrie Medlen, a Registered, Licensed Dietitian is also the mother of a teenage son with Down syndrome. With a combination of professional expertise and deep respect for individuals with Down syndrome and their families, the author has written a comprehensive guide for understanding the importance of establishing healthy eating and lifestyle habits.
The book begins with a section about Building Healthy Attitudes, which not only provides specific information about the physical, sensory and developmental process of eating, but also discusses the importance of building a positive attitude towards eating and food. We are reminded that the feeding relationship is based on trust. Parents are responsible for providing "attractive, safely prepared, balanced and tasty foods at appropriate times," and children are responsible for "how much" and "whether" the food is eaten. There are lots of tips about how to understand and work with your child.
Other sections in this book are: Nutrition-Related Concerns for People with Down Syndrome, Teaching Healthy Choices to Encourage Healthy Lifestyles, and Learning Activities. The first of these sections includes important information on nutrition, physiology and special concerns such as Celiac Disease and Diabetes. Since my own daughter was diagnosed with Celiac a year ago, I have learned that people with Down syndrome have a slightly higher risk for this disease than the general population, so I was pleased to see it discussed in detail. The sections on Teaching Healthy Choices and Learning Activities were full of good, practical ideas for promoting a wellness plan for individuals with Down syndrome.
One of the best features of the book is that it includes a wealth of hands-on worksheets to help individuals build the skills they need to be an active partner in managing their own health. Further good news from Joan Medlen is that it is never too early, or too late, to start building a healthy lifestyle!
by Becky Rizoli, Federation Staff Member
I hear these kinds of remarks wherever I go:
A comedian mocks people who are in therapy.Jokes that ridicule any disability, disorder, or mental illness make be angry. I'm frustrated by the thoughtlessness of people who make these jokes. When appropriate, I speak up and say, "That's not funny," or, "Would you say that if I had that disorder?"A clergyman describes a prayer as "ADHD" during services.
A woman jokes to her friend who uses vulgar language, "I wonder if you have Tourette's Syndrome."
Sometimes people apologize. However, more often than not, they react defensively and respond, "I'm just kidding around. Can't you take a joke?"
No, I can't take these types of jokes. To the people who make these jokes, I am part of the joke because I have attention deficit hyperactivity disorder (ADHD), as well as some learning disabilities (LD). I have taken Ritalin since second grade, when I was first diagnosed.
For many years, I was ashamed about having special needs and hid my ‘secret' from my friends. I was afraid they would think less of me if they knew I was ‘different.' One reason I was so ashamed about my disabilities was because of people's attitudes about ADHD. I would hear them say to others, "What's the matter with you? Do you have attention deficit disorder?" or "Look who forgot to take his Ritalin today!" If they knew about me, I imagined people would say, "You're one of those whacked-out hyper kids who needs medication in order to function?"
With mentoring and support, I eventually worked up the courage to tell my secret to my friends. Contrary to my expectations, my friends were glad I had told them and respected my honesty. I have learned to accept that I have ADHD and LD.
So this is why I'm bothered by jokes about people with mental health issues and other disabilities. It disturbs me that our culture tolerates this kind of humor because it is an indication that our society does not tolerate individuals with special needs. These jokes imply that people with disabilities are inferior.
I know most people are not trying to be offensive. They are just trying to be funny. Unfortunately, they don't realize that a joke, which gives one person ten seconds of laughter, can cause someone else ten years of pain. There's a world of difference between using comic relief to help you through difficult situations and making jokes that stigmatize certain individuals. How do you learn the difference? Ask yourself if you would make that same remark in front of someone who had a particular disability. If the answer is no, the comment is probably inappropriate.
Here are a few suggestions to help eliminate the stigmas surrounding disabilities and mental illness:
Feeling a little unorganized?
Looking for some ideas to get you back on track?
Family TIES Invites you to join us for...
"LET'S GET ORGANIZED!"
A workshop especially designed for
families of children with special needs to learn how to get more organized.
Tired of filing school and medical reports on top of the refrigerator?
Looking for ways to keep track of all your child's important papers? We
offer creative, fun, family-tested, tried-and-true ways to pull it all
together.
Call your Family TIES Coordinator at 1-800-905-TIES for more information on this and other workshops we offer through our "NEXT STEPS" series!
The Parent/Professional Advocacy League (PAL), a project of the Federation, is the Massachusetts State Organization of the Federation of Families for Children's Mental Health. PAL provides education, advocacy and support to over 4,500 families through a network of support groups facilitated by 41 Parent Coordinators across the state. Families can connect at one of over 50 support groups as they seek mental health information and services for their children.
The Parent Coordinators receive training from the statewide PAL office to support their work with families. These trainings focus on various areas where families dealing with mental health issues need information and support and include:
PAL is working with the Federation to assist the Massachusetts Behavioral Health Partnership in recruiting parents of children and adolescents with mental health needs into positions similar to Parent Coordinators for a newly forming Medicaid program entitled Coordinated Family Focused Care.
Interested parents can call Carol Gramm at 617-542-7860, ext. 202.
When children become good readers in the early grades, they are more likely to become better learners throughout their school years and beyond.
Learning to read is hard work for children. Fortunately, research is now available that suggests how to give each child a good start in reading.
Becoming a reader involves the development of important skills, including learning to:
You can also help your children become readers. Learning to read takes practice, more practice than during the school day.
From Put Reading First: Helping Your Child Learn to Read. For more information about how to support your child's reading program at home, call ED Pubs at 1-800-228-8813 and ask to be sent free copies of Put Reading First: Helping Your Child Learn to Read, Put Reading First: The Research Building Blocks for Teaching Children to Read, and A Child Becomes a Reader.
Children learn through repetition. Telling the same stories and singing the same songs over and over may seem boring to you, but not to children. When you repeat a story, children are learning about the meaning of words and how words tell a story. The way you read to children makes a difference. Read stories in a way that encourages children to participate. Follow these tips to make reading more enjoyable.
The No Child Left Behind Act of 2001 requires "adequate yearly progress," the minimum level of improvement school districts and schools must achieve every year. In technical terms, adequate yearly progress (AYP) refers to the growth rate in the percentage of students who achieve the state's definition of academic proficiency. Each state will set the AYP gains every school must meet to reach 100 percent proficiency at the end of 12 years.
Under No Child Left Behind, "adequate yearly progress" measures are steps toward our nation's bipartisan goal of closing the achievement gap and ensuring that every child is proficient in math and reading by the school year 2013–14.
By testing every child, parents and teachers will know the academic achievement of each group of students and can work together to ensure that no child will be left behind. This is why test scores will be broken out into the following sub-groups: economic background, race and ethnicity, English proficiency and disability.
Defining adequate yearly progress ensures that every school improves every year so that every child--regardless of race, parent's income or family background--learns and excels. Tracking this progress yearly will help recognize great schools making great strides in teaching all children. And by following AYP gains at schools where children are not learning, parents and education officials will know which schools need to improve. <