This year the Federation celebrates it Silver Anniversary -- 25 years of parents helping parents. As one way to commemorate our history, we asked Martha Ziegler, Federation founder and Executive Director for 23 years, to reflect on those early days. Martha has played key roles -- first and foremost as a mother, later as a child advocate and national parent leader -- in the history of the parent movement. In her efforts to achieve quality educational opportunities first for her daughter, Martha furthered a movement that would begin to change forever the life possibilities for children with disabilities in the United States and around the world. At the heart of all of Martha's mothering and advocacy is a vision of respect, dignity, love, and human rights for all human beings.

When our family moved to Lexington, Massachusetts, in 1971," Martha explains, "we decided it was time for Mary Ann, our daughter with autism and all the urgent perplexing needs that come with autism, to go to public school. If our taxes were paying for son Fred's education, why should they not also pay for Mary Ann's schooling?" Up to that time Mary Ann had legally been denied public education in Connecticut and New York. Had the Ziegler family stayed on Long Island, Mary Ann -- then seven years old -- would have gone to school in a converted warehouse, in the next county along with 150 other children much like her. 

Unwilling to compromise her own vision for her daughter, Martha realized she could not afford to sit back and wait for things to change. At a parent meeting she heard about an amazing bill that had been filed in the Massachusetts Legislature, a bill that, in Martha's words, "would mandate locally supported education for all children with disabilities, with individually tailored programming and meaningful parental input."

Martha became a prime mover, prowling the halls of the State House lobbying for passage of the exciting new law. "One day," Martha remembers, "a sweet gentleman tried to give me a paycheck, assuming I was on the staff; every Friday afternoon, the elevator man would say, 'Have a nice weekend, dear.'" He knew Martha would be back at the State House on Monday.

Soon, Martha became co-chair, along with a leader of NASW, of the Coalition for Special Education, a varied collection of 42 organizations, from disability groups to the Massachusetts PTA and Greater Boston Chamber of Commerce, that lobbied for the law.  These lobbying efforts succeeded with the enactment of Chapter 766 in 1972, to become effective in September 1974. The bill had been filed by Speaker of the House David Bartley and House Education Committee Chairman  Michael Daly, both Democrats, and it was signed into law by Gov. Frank Sargent, a Republican.

It is one of the nation's first comprehensive laws mandating individualized education for all the state's children with disabilities. Parent advocates know that passage of a law, grand and essential as that is, does not guarantee much. Martha and other parent leaders realized that making the promise of the law a reality in the lives of real children would require that parents be informed and empowered. Large numbers of parents would need to learn about the law. They would also need the support and encouragement of other parents to change not only their own expectations for their children, but to have the courage to insist that schools and society see their sons and daughters in a new light as well. To that end, Martha led the effort to pull the parent-run, disability-specific groups together to form their own organization, the Federation for Children with Special Needs.

Starting with a pilot grant from the federal Office of Education, the Federation opened an office in July 1975. Martha said, "We were thrilled to have our own copy machine, paid telephones, and part-time paid staff!"

[Tune in next issue for more about the Federation's 25 years and the role Martha and other Federation staff played in Massachusetts and the nation in making parent-to-parent training and information a national priority!]

Back to Top

Happy Birthday, Chapter 766!

It's time to celebrate! This school year marks the 25th anniversary of the implementation of Chapter 766. What a perfect opportunity to demonstrate the success of this law and the profound difference it has made in the lives of children with disabilities, their families, and communities! Twenty-five years ago many children were legally rejected from school, either to be warehoused in institutions or to languish at home. Today, children with disabilities live, go to school, and work in their own communities thanks to Chapter 766. 

To celebrate how far things have come with Chapter 766, we need your help. The Federation and other organizations propose that celebratory activities take place across the state in February. Here are some ideas: 

Begin your local school committee's February meeting with a 766 Birthday Celebration. 

Have a 25th anniversary cake-cutting ceremony, with students, parents, teachers and others sharing success stories.

At an awards ceremony for graduates of Chapter 766, invite students, teachers, administrators, school committee members to share stories.
 
Work with your local special education director, teachers' union, and Parent Advisory Council (PAC) to determine how to best celebrate in your area. Remember to invite state legislators and media representatives to share in your celebration.

The celebrations should be simple, easy to do, and support your community efforts. Massachusetts Advocacy Center will provide back-up materials to support your efforts (such as a sample press release, a sample letter to the editor, and general points of interest on Chapter 766).

In addition to the Federation, the following organizations endorse these activities: Massachusetts Advocacy Center, Disability Law Center, Massachusetts Association of School Superintendents, the Administrators of Special Education, Massachusetts Teachers' Association, and Massachusetts Federation of Teachers.

For more information, assistance, or if you have suggestions to pass along, please contact Julia Landau at Mass. Advocacy Center 617-357-8431.

Back to Top

Federation Project Updates

Community Outreach and Empowerment Project (C.O.E.P.)
The Federation is pleased to announce the start of C.O.E.P, a new community-focused project. C.O.E.P. was created with the goal of assisting and supporting families in Roxbury, Mattapan, Dorchester, and Jamaica Plain who face the challenges of raising children with emotional/behavioral disorders and learning disabilities. C.O.E.P. will provide information and referral services, educational workshops on relevant topics, and support groups. Support group meetings will begin soon!  For more information, please contact T.J. Hutson: 617-236-7210 ext. 113.

*Todos los servicios son proporcionados en espa–ol. Para m‡s informaci—n, llame a Diana Rocha: 617-236-7210 ext. 171.

The Community Outreach and Empowerment Project is funded by a
grant from the Boston Foundation.

New project to serve ALL Massachusetts parents
Check out the first issue of Parents' PLACE Bulletin included in this NewsLine! The Bulletin comes to you from the Federation's new project, Parents' PLACE, Parents Learning About Children's Education.  Parents' PLACE is the Federation's first project for all parents of all school-age children, not just parents of children with disabilities.  The goal of the project is to inform and support parents in the most important jobs of raising and educating their children.

Back to Top

Legislative & Policy Update:
Ch. 766 Legislative Update

State lawmakers predict that the vote on changes to Chapter 766 (Ch. 766), the Massachusetts special education law, will occur late winter or spring of this year. Major changes to Ch.766 have been pending for some time, as legislators and policymakers decide how to respond to rising school district expenses for educating students with severe disabilities. At the center of the debate is a fundamental question: Should the issue of rising local costs for educating students with severe disabilities be addressed by significantly increasing state aid or by reducing protections and services?

Major changes to the Ch. 766 law and regulations have been proposed in the following areas: 

Repeal of the "maximum feasible benefit" service standard

Reduction of independent evaluation rights

Changes to state funding of special education

Extended timelines for IEP development

Reductions in transportation rights and protections

Elimination of parents' and teachers' right to participate in decisions regarding a student's specific placement

Elimination of the Parent Advisory Council (PAC) requirement

Votes regarding these proposed changes will be occurring both at the State House and at the Massachusetts Board of Education. The Board of Education plans to vote on changes to the Ch.766 regulations at its March 28 meeting. The Joint Committee on Education has not yet set a definite date for the State House hearing. It is likely that the hearing will be conducted sometime in March or April.

The legislature has arranged for an international consulting firm McKinsey and Company to conduct a pro bono study on changes to the "maximum feasible benefit" standard and special education eligibility requirements.  McKinsey hopes to finish the study by the end of February, and the legislature may decide to await completion of the study before conducting the State House hearing.
Back to Top

From the Executive Director
Kids Pay Price for MCAS Confusion

Fourteen students received the news. Their MCAS test responses had been scored as zeros because the accommodations they used were not allowable under state rules. Even though school administrators claim they checked it out with the state Department of Education's MCAS Support Services helpline, they apparently misunderstood or were given bad advice.  In any case, eleven 8th-grade and three 4th-grade students received only the basic 200 on their exams. They participated in good faith, using the accommodations approved by their IEP Teams and school administrators. Yet, these fourteen paid the price with a defeating failure!

The federal special education law IDEA-97 includes new rules intended to make sure that students with disabilities benefit from education reform improvements. For example, it calls for every student with a disability to have access to the general curriculum and high standards. It also calls for all students to be included in the state's mandated testing system, MCAS. This requirement reinforces the message to schools that they are accountable for the learning achievements of all students with disabilities. At the same time, it promises students with disabilities that they will have fair and equal opportunities to demonstrate their knowledge on mandated tests. This promise is so important because, in the past, students with disabilities have been excluded from these tests. 

The law establishes three ways for students with disabilities to participate fairly. If possible, students should take the MCAS in the usual fashion, without any accommodations. Students who need accommodations in order to demonstrate their knowledge are entitled to them. The laws instruct IEP Teams to specify the needed accommodations in the IEP, prior to the testing period. If the Team determines that a student cannot reasonably take the standard ("on-demand") version of the MCAS even with accommodations, then the student must participate through an alternate assessment. The student's IEP Team is responsible for determining how students with disabilities participate in MCAS. (Or, for students on a Section 504 plan, the 504 Team determines how a student participates.) The Mass. DOE, however, has established a list of "allowable" and "impermissible" accommodations intended to prevent alteration of the test (and in their view, unfair advantage) and preserve test security.

Herein lies the problem. Fourteen students thought they were taking the test under approved conditions, later to find out that the DOE and its testing contractor saw it differently. And these fourteen students paid the price.

Ensuring fairness and equal opportunity for full participation are not in conflict with preserving test integrity. Test accommodations, by definition, are intended to provide students with an equal opportunity to demonstrate their knowledge. They do not provide a student with an unfair advantage. Indeed, a full range of accommodations consistent with the individual needs of students is essential to ensuring fairness and must be guaranteed by each school district and the state.

As parents, we must demand fairness and full participation in all aspects of education for our children. We must insist that school districts allow IEP Teams to draw from a broad array of possible accommodations and alternate ways to assess the knowledge of students. These demands are entirely consistent with the original language of the Massachusetts Education Reform Act and with IDEA-97. These laws establish the IEP Team as the authority for deciding when and what accommodations should be used -- both for teaching and for testing students. The state should not continue to arbitrarily limit the Team's decision-making authority in contradiction to state and federal law. 

Fourteen students doesn't sound like a lot. But when all 14 are from a single school district, imagine how the numbers must add up when each of the state's 350 districts is examined! Students with disabilities need to be held to high learning standards. To escape the tyranny of low expectations, they must be given the educational supports and accommodations they need to achieve great things and to demonstrate their knowledge.

This NewsLine is devoted to assisting parents and professionals in their efforts to ensure the success of every student in this year's round of testing. Students have every right to experience MCAS in a constructive way and to be given the tools they need to demonstrate their knowledge.

Back to Top

Ask Eileen
Empowerment Through Information

This column highlights questions that Eileen and the other Federation Information Specialists are most frequently asked.

Question:
With all of the changes being proposed to Chapter 766, I'm not sure how to proceed. What rules apply now when the school is not following the Chapter 766 Regulations relative to my child's Individualized Education Plan?

First of all, the Chapter 766 Regulations and processes for resolving disputes do remain in effect for the 1999-2000 school year. In resolving disputes with the school, however, it is always best to begin by speaking with school personnel first to attempt to resolve the situation. 

If talking proves unsuccessful, you can turn to the "Problem Resolution System." This system is the Department of Education's (DOE) process for receiving, reviewing, and resolving concerns regarding students who are not receiving the educational services or procedural protections to which they are entitled. Education Specialists answer questions about education law or regulations and refer questions to other knowledgeable persons where necessary. You can contact this system by calling 781-338-3000, ext. 6401.

When you call, an Intake Specialist logs-in your "concern" and sends a notice to you that the concern has been registered with DOE. This notice will provide you with the following information:
 

the name of the Education Specialist who will be providing assistance,

information on the Problem Resolution System, and

an Intake Information Form that you must complete and sign that will notify DOE and the applicable local agency about the nature of your concern and your attempts to resolve the problem.

Five days after the DOE receives your signed Intake Information Form, an Education Specialist will contact you to discuss your concerns. The Education Specialist will then review your concerns with you and decide if the concern is related to education law or regulation. If the concern is not related to a law or regulation, the Education Specialist will tell you that the DOE does not have the authority to address it. Where possible, though, the Education Specialist will offer advice on how you might proceed.

If your concern is related to education law or regulation, the Specialist will immediately contact the school to explore the best method for resolving the issue. If the Specialist feels that the school has not had a chance to address your concern, he or she may contact the Superintendent or other administrator directly.  DOE will usually expect a report of this local review no later that 15 calendar days from the date it notified the school of the concern.  A copy of the school's response will be sent to you.

The Education Specialist will review the local report and decide whether any further investigation or action must be taken. In all cases, the Education Specialist is supposed to review the concerns with you and all other appropriate parties to determine whether education law and regulations are being followed. If the Specialist determines that the school is not meeting the requirements of the law, DOE will work with school officials to correct the situation.

Usually, problems will be resolved within 60 calendar days from the date your signed Intake Information Form is received.  If resolution is not reached within that time period, you should receive a letter from DOE giving the reason for the delay and when the concern is expected to be resolved.

For more information, request a "Problem Resolution System" guide by contacting DOE at: Massachusetts Department of Education, 350 Main St., Malden, MA 02148.
 

Back to Top

MASS APPEAL
Mass Advocates Standing Strong (MASS) is an organization of people with disabilities. Their mission is to "speak out for ourselves and each other," and to "stand by each other and make things better in our lives." MASS believes in the importance of all people, and in the right of all people to be treated equally, to make their own choices, and to have the support they need.

For more information please contact MASS at:  MASS, P.O. Box 6025, North Plymouth, MA 02362-6025; telephone 781-585-2422.
 

CAREGIVING STUDY SEEKS PARTICIPANTS
Massachusetts parents of adolescents and adults with autism, age 10 and older, are invited to participate in a study of family life. Conducted by the Heller School, Brandeis University, the study will include in-home interviews with mothers, and fathers will be asked to complete questionnaires. In interested, please call Dotty Robison, Project Manager, 781-736-3792, or e-mail her at Robison@Brandeis.edu.
 

MASS. DOWN SYNDROME 17TH ANNUAL CONGRESS
Featuring National Keynote Speaker and Self-Advocate Karen Gaffney, speaking on "Opening Doors." Saturday, March 25, at the Worcester Centrum Centre. Contact MDSC at 800-664-MDSC.
 

MOBILITY SERVICES 
Mobility Services is a free program that teaches people with disabilities to use the MBTA local bus and T services. For more information, call the Kennedy Center, 221 North Beacon St., Brighton, MA 02135; telephone 617-782-9400.
 

BROTHERS AND SISTERS:
AN INFORMATIONAL FORUM
A two-day conference (April 1 and April 8) for adult sibling of people with cognitive disabilities. For more information, call LaJoyce Woolery at 617-562-4094.
 

The Presidential Race
Want to stay informed about the candidates' stands on issues?  All one has to do is go to this page for the Washington Post:
http://www.Washingtonpost.com/wp-dyn/politics/elections/2000/index.html.
Scroll down until you hit White House candidates and you will get direct links to their campaign homes pages.

Back to Top

Accommodations Fact Sheet

This article is excerpted from the PEER Fact Sheet on Accommodations and adapted to reflect current Massachusetts practice. The original publication was approved and funded by the U.S. Department of Education, Office of Special Education Programs.

Higher expectations for students with disabilities have led to greater attention being paid to the accommodations students need to have full and equal access to educational opportunities in instruction and testing. The Individuals with Disabilities Education Act Amendments of 1997 (IDEA) reflect and reinforce these higher expectations. IDEA states that the education of students with disabilities can be made more effective by having high expectations for such children and ensuring their access to the general curriculum to the maximum extent possible. The law requires Individualized Education Program (IEP) Teams to develop concrete strategies for linking IEPs to the general curriculum.

IDEA recognizes the importance of assessment for improving educational results for students with disabilities. Therefore, IDEA also now requires that all students with disabilities participate in state and districtwide assessment programs. IEP Teams must address how students will participate in large-scale assessments.

Students with disabilities have the right to needed accommodations during testing. When used during testing, an accommodation generally does not change the test content or difficulty. Rather, an accommodation allows students to demonstrate what they know by reducing the interference of the disability. IEPs must include a statement of the accommodations necessary for a student with a disability to participate in assessments.

Test accommodations must be based on a student's individual needs. Under IDEA, the IEP Team has the authority to decide which, if any, accommodations are appropriate for a child. IDEA requires IEP Teams to consider the full range of accommodations, including those utilized in classroom instruction. Use of some types of accommodations may initially be controversial, especially when the accommodation is closely related to the skill being assessed (for example, reading a reading test). Yet it is essential to allow consideration of all types of accommodations to comply with federal law and to protect against discrimination in test administration.

Considering all types of accommodations becomes even more critical for high-stakes tests, such as the Massachusetts MCAS tests. Nevertheless, Massachusetts DOE has developed a list of "allowable"1 and "not permissible" accommodations. The following categories of allowable accommodations and examples are excerpted from this list:

Timing or scheduling -- Administering the test in short periods, at particular times of the day, giving frequent breaks.

Setting -- Administering the test in a small group, in a separate room, individually, with noise buffers, with the student facing the administrator.

Presentation -- Administering the test using magnifying or amplifying equipment, large print, Braille, or American Sign Language; verbally clarifying general instructions; reading parts of the test.

Response -- Answering questions by dictating to a scribe, recording answers using a template or a tape recorder (to be transcribed by a school official) or assistive technology, a test administrator checking to ensure that the student is placing responses in the appropriate places.

"Not Permissible" Accommodations 
Massachusetts has declared these accommodations "not permissible:" scribing the English Language Arts (ELA) Composition test; reading or signing any portion of the ELA Language and Literature (Reading) test; using a calculator during any grade 4 Math test session or any non-calculator session of the grades 8 or 10 Math tests; and administering MCAS tests for a grade level that is not matched to the student's chronological age. 

The state, therefore, forbids any student from having the English test read aloud, no matter what the disability. It also bars students from using sign language or dictating their English composition to a scribe. Advocates argue that these limitations take decisions about the use of accommodations away from IEP Teams. In December, the Boston Globe reported that students had failed the MCAS because they were not allowed to use certain aids, such as scribes, readers, and special computers. In January, the Globe reported that the Attorney General was investigating. 

Until this issue is resolved, it is recommended that IEP Teams consider the full range of accommodations according to individual students' needs. If the IEP Team recommends an accommodation that is "not permissible," (such as a reader for the ELA assessment for a student who is blind and does not use Braille), the IEP Team should still include a statement that the Team recommends a reader for ELA.

--
1. The document (Appendix A) explains that the list is not exhaustive and that schools may consider other accommodations. It is included in "The Massachusetts Comprehensive Assessment System: Requirements for the Participation of Students with Disabilities." For a copy, call DOE at 781-388-3300 of the Federation, or access the DOE website, www.doe.mass.edu.

Back to Top

Health News
from Family Voices at the Federation for Children with Special Needs

Family Voices Updates
Family Survey
Update on "Your Voice Counts!" All the responses have been analyzed and reports will soon be available on the information gathered from over 3,000 families around the country who have told us about their health care experiences for their children with special health care needs. Massachusetts' families are among the families from 20 states who were asked to respond to this survey. Key findings from the national data and their implications for federal policy were featured in a Congressional Briefing held on February 7, 2000, on Capitol Hill, Washington D.C.

Watch the Family Voices website for more information on the specific reports and their availability.

There are two new national efforts currently under way to collect information from families of children with special needs regarding their children's health experiences. One, a project of the federal Maternal and Child Health Bureau, will be a national telephone survey of families of children with special needs in every state, with data release planned for early 2002. Another initiative is to include questions about children with special health care needs of all health insurance plans when quality information is collected for HEDIS. (This is a quality measurements system that many health plans participate in.) Family Voices staff are participating in the planning of both efforts!

For additional information on the Family Survey, contact Nora Wells at 617-236-7210 ext. 123.

--
Family Voices is a national grassroots organization of families and friends speaking on behalf of children with special health care needs.  The Federation is one of the founding members of Family Voices and conducts Family Voices projects from the Federation office in Boston.

Back to Top

Early Childhood Corner

New Leadership at Early Intervention Training Center

With the new year, the Early Intervention Training Center at the Federation welcomes new faces to its team. Ruth-Ann Rasbold and Peggie O'Hare have joined the Early Intervention Training Center as Director and Associate Director, respectively.

Ruth-Ann comes to the Training Center with vast experience from many perspectives. Originally trained as a special education teacher for early childhood programs, she has worked as a teacher, a teacher trainer, and a program coordinator.  She has been active in local, state, and federal policy on disability issues, especially special education and early intervention, over the past 25 years. Her own experience as a parent when her two children were in early intervention has contributed most to her understanding of young children and their families and the early intervention system.

Peggie has worked in a range of settings including diagnostic medical centers, preschool programs, early intervention, and public schools. She has been primarily involved in direct service administration and adult education. Peggie has run several federal projects that focused on training for support people working with children with special needs.  Most recently she was the director of Child Care 2000 at the Massachusetts Office of Child Care Services (OCCS).

The Training Center is offering 24 workshops this spring, as well as on-going mentorships and certification.  "In addition," Rasbold added, "we are conducting a review of the activities of the Training Center and of the training and technical assistance needs of the early intervention community in Massachusetts. We are looking forward to examining and revitalizing our work." O'Hare added, "It's an exciting time to be at the Federation's Early Intervention Training Center as we build on the experience of the past two and half years to serve all of our constituents: early intervention personnel, parents, and other folks who work with infants and toddlers and their families in their natural environments."

The mission of the Early Intervention Training Center is to enhance the quality of services and supports provided to families of infants and toddlers with a wide range of developmental needs by offering professional development to early intervention personnel, families, and other early childhood personnel in community programs.

Ruth-Ann and Peggie join Joan Brinckerhoff, the early intervention certification specialist, and Janet Price, the mentorship coordinator, at the Training Center. The Training Center is one of five early childhood programs at the Federation.

Back to Top

Western Mass Federation Office
New Staff, New Office, New Start

After several months of searching, the Federation is pleased to announce that Julie Sinclair has accepted the position of Director of the Western Massachusetts office. Previous director, Mary Quigley, resigned last summer to be able to spend more time attending to her son's special needs. Julie, a parent of a child with Down syndrome, comes to us from the Northampton office of the Massachusetts Department of Mental Retardation, where she served as the Children's Services Coordinator. In addition, Julie has a 20-year background in special education as well as human services management.

Julie will assume responsibility for the Parent Training and Information Center for Western Mass as well as serve as coordinator of the Western Massachusetts Transition Project.

We are also pleased to announce that the Western Mass Federation office will be moving from its present location at Abilities Unlimited in Westfield to the Northampton office of the Association for Community Living. To better collaborate with family activities in the region, we will share space with ACL's Family Empowerment program. The Federation is deeply appreciative of David Scanlon and Abilities Unlimited for their hospitality of many years. A specific moving date has not yet been determined but will be in the near future.

In the meantime, parents can still reach the Federation at 413-562-2915 or, toll free at 800-331-0688.
Back to Top

Parent Training and Information | Parents Engaged in Education Reform

Back to Top	Home