A song from the motion picture "Gigi", "Ah, Yes I Remember It Well" aptly describes my feelings as I look back on the early days of my son's schooling. Robert has cerebral palsy and is ambulatory through the use of crutches. In the early 1970s, it was not the norm for youngsters with physical disabilities to attend public school; the terms "integration," "inclusion" and "mainstreaming" were not in anyone's vocabulary. Children like Robert were routinely placed in schools that catered only to students with disabilities. Upon Robert's graduation from the segregated pre-school he attended, I apprehensively met with the principal at my local school and asked, as a "favor," that my son attend her school. Needless to say, her reaction was not what I wanted to hear.

"Why doesn't he attend one of the two wonderful schools in MA where all his needs could be attended to and he could be with children like himself?" was her response.

Since I was new to the entire educational process, I probably would have accepted the school's decision; however, through the intervention of one of the very few advocates available at the time, I decided not to accept the principal's recommendation. Indeed, without the advocate's help and guidance, my son's entire education would have taken an entirely different route and he might not have been prepared to attend a first rate university, where he received his Bachelor of Science and later earned a Master's degree in Political Science. 

My experience was not unusual and thirty years later, many parents still experience feelings of isolation and vulnerability when they first approach school administrators in regard to placement and services for their children with special needs. There is no doubt that the presence and support of another person can help relieve some of the anxiety associated with this process. 

When I was negotiating a placement for my son, there were few advocates, and most did not provide free or low-cost services to parents. There was some training available through private advocacy organizations such as the Federation and the Massachusetts Advocacy Center but these opportunities were limited by funding issues. 

Due to the increasing demand for trained advocates with knowledge of the special education laws, it became obvious that a system that would provide advocacy training had to be established within the Commonwealth. The Massachusetts Developmental Disability Council awarded money to the Federation to develop and implement training. This training would ensure that parents of children with special needs knew the special education law, knew their rights, and would be able to negotiate appropriate services for their children. Attorneys Robert Crabtree and Lawrence Kotin were the first directors of this project and along with Federation staff, designed a course that would train parents to become knowledgeable and skilled advocates. In compensation for the training, these parents had to be willing to make a sustained commitment to represent parents of children with special needs regarding special education issues. In fact, this course provided the foundation for all the training programs offered by the Federation over the past 20 years. 

Initially, two training programs were held each year -- one taught advocacy on behalf of others, the other concentrated on self-advocacy. Over time, these programs evolved into one course. As a result, the Federation has a solid framework for recruiting, training, and supervising advocates whom we call "parent consultants". There are now a significant number of parent consultants available to assist parents in their quest for a free and appropriate public education for their children with special needs. We estimate that close to 800 parents and professionals have participated in this consultant training. To meet the increasing demand, this advocacy training is now offered three times a year, once in Boston, once in Worcester and again in Northampton. 

The early participants viewed their advocacy efforts as an informal way to help other parents. Many provided their services at no cost. Today, more and more participants take the consultant training as a first step in a long-term career change where their primary focus is to empower parents to share their experiences and help other parents in need.

The Federation is indeed gratified that the parent consultant training has become so popular and successful and that there have been so many benefits. Many children's lives have been changed because they received a better education. Parents no longer have to feel isolated and alone. These dedicated parents and advocates have helped change the philosophy of school administrators with regard to integrated placements and supports within the general school curriculum 

As we look to the future, the frequency, duration and content of the training may change to meet the changing needs and issues that periodically emerge within the Commonwealth. However, the Federation's commitment to helping parents remains constant.

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Massachusetts Advocacy Center Honors Ruth Ann Rasbold and Cassandra Saunders
Ruth-Ann Rasbold, Director of the Early Intervention Training Center at the Federation was honored at the Hubie Jones Child Advocacy Award ceremony held at the Federal Reserve Bank on September 27, 2000. Ruth-Ann was recognized as a hero in advocacy for special education. Those who have had the opportunity to work with Ruth Ann, or to know her personally, know that she is a strong articulate woman, with a clear vision, whose advocacy and education efforts have touched the lives of thousands of children with disabilities in Massachusetts, and throughout the nation. 

For the past 13 years, Ruth-Ann Rasbold has worked at the Federation in a variety of roles, facilitating collaboration between parents and professionals. In addition to her work with the Federation, she is involved in her local Parent Advisory Council, which struggles to maintain and improve special education supports and services, as well as community supports and accessibility. Ruth-Ann attributes her fire, passion, commitment and dedication to civil rights and equal opportunity to her two children, Megan, a sophomore at Newton North High School, and Max, a freshman. As a parent, Ruth-Ann has experienced and overcome countless barriers of discrimination faced by children with disabilities and their parents.

Cassandra Saunders, a student with cerebral palsy, now a senior at Sandwich High School, was also honored at the Hubie Jones Child Advocacy ceremony. Cassandra is the daughter of Federation staff member Toni Saunders. Cassandra has been in integrated school settings since preschool. As a result of her experiences in public school she has become a strong advocate for inclusion for children with disabilities. As a young woman with a disability, she has a personal determination to make a difference and to maintain a positive outlook on life and hope for the future. As a student spokesperson and advocate, she has testified at the statehouse, advocating for maintaining maximum feasible benefits under the Massachusetts special education law, Chapter 766.

Cassandra has developed a special interest in technology and will attend Massachusetts Communication College after graduation in June 2001. Her passion for music has inspired her to write songs and she has recently cut a demo tape entitled "Angel for Life".

The Federation joins the family and friends of Ruth-Ann Rasbold and Cassanda Saunders in congratulating the advocacy efforts of both these exemplary people.

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Legislative & Policy Update: Board of Education Passes Emergency Regulations

For the second time this year, the Massachusetts Board of Education has issued new state regulations on special education. The Board, at its September meeting, passed emergency regulations to replace an earlier version of regulations that had taken effect on September 1, 2000. This was necessary because of the significant changes in state law passed this summer (see NewsLine, Summer 2000). 

Under Massachusetts's law, these emergency regulations are effective for up to 90 days. This allows the new regulations to be in effect even during a public comment period. The Board is scheduled to pass final regulations at its December meeting.

Among other things, the new regulations define parent consent and related services. The regulations also restore previous regulations that had been dropped by the Board and reestablished by the Legislature in the following areas:

• Student access to school facilities,
• Eligibility for related services,
• Timelines for the development of IEPs (Individualized Educational Programs) and the delivery of services,
• Transportation,
• Placement decisions,
• Parent involvement,
• Parent advisory councils,
• Communication with parents, and
• Approval and oversight of private day and residential schools.

• Annual parent training workshops
• Teacher training in certain areas
• Curriculum accommodations plans developed by school districts
• Sliding fees for Independent Educational Evaluations
• Preference for in-state programs, and 
• Other administrative requirements. 

1. Extended evaluations should require the writing of an IEP for as many services as are known to be necessary.
2. A new term, "students with very complex needs," is introduced in the regulations, but not defined.
3. For these "students with very complex needs," placement timelines can be extended under certain circumstances.

In addition to the emergency regulations, the Commissioner of Education has issued three three Special Education Advisory Memos to school districts. The memos address "Changes to Massachusetts Special Education Law," "Compliance Activities Required by the U.S. Office of Special Education Programs," and "Guidance on Using a Sliding Fee Scale for Public Payment of Independent Educational Evaluations in Special Education." Finally, the Department of Education has released a new Parent's Rights Brochure which is available on their website, www.doe.mass.edu/sped.

STATE HOLDS MEETING TO ADDRESS U.S. DOE MONITORING REPORT
On October 3, 2000, the Massachusetts Department of Education sponsored a public meeting to review the areas of non-compliance under IDEA-97 (the federal special education law), as identified by the U.S. Office of Special Education Programs (OSEP). Participants included members of the Statewide Advisory Council on Special Education (SAC) and others who served as members of the Statewide Steering Committee required by OSEP for the monitoring review. In addition, key staff from Mass DOE and the Education Committee in the Legislature were present. (Federation Executive Director, Richard Robison who is chairperson of the SAC, chaired this improvement planning meeting.)

Together, the group reviewed each of the 14 areas cited and suggested ways in which the state might improve its compliance with the law. The group generated a list of "Activities to Achieve Results", some of which may be included in an improvement plan. The plan needs to be presented to OSEP in the near future. Topics discussed included:

• IEP development,
• Provision of psychological services when needed under an IEP,
• Availability of extended-school-year services,
• Lack of integration opportunities for children with disabilities served in separate educational environments, 
• Opportunities for children to be involved in and progress in the general education curriculum,
• Lack of access to vocational education 
• Parent participation in IEP and placement decisions, 
• Development of statements of transition services, 
• Involvement of non-educational agencies in transition planning,
• Invitation of students to plan their own transition services,
• Development of transition needs statements at age 14, and 
• Overall supervision of local districts by the state, including monitoring services in charter schools. 

From the Executive Director
The New Frontier: Access to the General Curriculum

While the changes are confusing, let us not be distracted from the substance of the matter. One of the most exciting aspects of the revisions to both federal and state special education laws is the renewed emphasis on all students gaining access to the general curriculum. As many have already discovered, the new IEP forms implement the requirements in IDEA that students' goals and objectives support their progress in the general curriculum. Subject by subject, the team must determine the student's present level of performance, the impact of a student's disability on their progress, their specific instructional needs and identification of the necessary supports and services which will enable them to make effective progress. 

At the risk of overexposure, I would like to share with Newsline readers the academic successes witnessed within my own family over the past year. As a high school student, my daughter who has Down syndrome is very much a part of the general education environment with support from special education. Topics covered in Early British Literature found her engaged in a study of Beowulf, Chaucer's Canterbury Tales, King Arthur, Shakespeare, David Copperfield and other classics. American History included exposure to the Declaration of Independence, political developments of the 1800's, US expansion, the Progressive Era (early 1900's), World Wars I & II, and on through the civil rights movement of the 1960's. Science included Biology from the parts of the microscope, to measuring in metrics. Topics included evolution, fossils & geological formations, dissecting a pig, to understanding genes and cells. Math focused more on money skills and the fundamentals (which was appropriate for her). She completed over a dozen book reports of various types, such as: a biography of Emily Dickinson, two of C.S. Lewis' Chronicles of Narnia, The Wizard of Oz, A Winter's Tale by Shakespeare and others. 

As I look back at the year's accomplishments, there are a couple of thoughts that come to mind. First of all, it is clear she is receiving a high quality education. In her situation, it would be easy to imagine that most of this was well beyond her. That would be true if it had been presented without accommodations. But in fact, the accommodations and support did enable her to truly engage in the educational process. Second, she was able, in most cases, to relate these lessons to her daily life circumstances. For example, on a trip to the Grand Canyon last summer, she recalled much of what she had learned about the rock formations and the evolution of the Canyon.

I am intrigued by much of the discussion that is emerging at the present time within special education circles, among parents and professionals alike. I have heard people ask, "Well, exactly what is the general curriculum?" or, "She's not a candidate for that!" The OSEP monitoring report identified this issue as one of the primary issues our state needs to address within special education. Administrators admitted to the federal monitors, without hesitation, that they "don't teach general education subjects at their school," or "they have no content specialists".

Someone has challenged my wife and myself about our thoughts on this by saying, "but when is she going to learn functional skills or life-skills?" Our goal is for our daughter (and our son) to become as independent as possible. What this implies is being prepared for and holding a job that will provide the resources necessary to become independent. Presently, students with significant disabilities experience unemployment rates that exceed 70%. The most functional skills I can imagine in our times, in our economy, are the literacy skills and awareness that comes from a high quality education. We will not neglect the practice of those skills, but for the first time we are no longer being asked to choose between special ed or curriculum, job skills or academics. The new IEP is structuring a change that is long overdue.
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Ask Eileen: Empowerment Through Information
This column highlights questions that Eileen and the other Federation Information Specialists are most frequently asked. 

Dear Eileen,
What are Procedural Safeguards and how do they protect my rights and my child's rights regarding special education services?

Procedural Safeguards are one of the principles of the federal special education law, known as IDEA (Individuals with Disabilities Education Act). Parents and their children with disabilities have specific rights in the special education process and procedural safeguards protect these rights. These safeguards ensure that families are aware of their rights, that information is shared in a timely manner, and that students receive appropriate services. Parents also have the right to disagree with the school's proposals and can offer their own. 

In order to be informed about decisions regarding your child's special education services and your right to participate, parents must receive Written Notice from the school district when their child is referred to special education for the first time or being reevaluated, about IEP (Individualized Education Program) meetings, or when the school proposes any change in a child's services. This notice must include an explanation of all the procedural safeguards (only partly discussed here) and must:

• Explain why the school will or will not provide specific services for your child,
• State any other options that were considered and why those will or will not be utilized, 
• Explain what evaluations, tests or other factors the school used to make the decision.

Parental Consent
As mentioned above, the school must notify the parents about any action they propose or refuse to take in regard to providing a free and appropriate public education to their child with a disability. Once they are informed, parents must give their consent before the school can proceed. Parents may withhold their permission if they feel it is not in their child's best interest. Parents may also decide to consent to some evaluations, but not all, or to only some of the services listed on the IEP. 

If parents do not respond to the school's request to evaluate a child or to the offer of services through an IEP the school may act without parent's permission if they can prove they tried to reach the parents many times without success.

The Right to Inspect and Review Records
Parents can request to review their child's records and the school must make these materials available within 2 days. There are two types of student records: the transcript and the temporary record, which includes major information about your child's special education eligibility, IEPs, standardized test results, evaluations and comments. 

The school cannot release your child's records to anyone without your consent. When they ask your permission to release records they must tell you which records, why and to whom. 

You and your child have the right to add relevant material to the record. You may also request that information be changed or removed by speaking with the school principal.

Families are encouraged to work in partnership with their school district to resolve any disagreements about special education services and placement for their child. However, if the parents and school are unable to agree and the parents feel the school system is not complying with the law, the procedural safeguards provide a way for parents to file a Complaint, to request Mediation or a Due Process Hearing. These are handled through the Massachusetts Department of Education (DOE). To file a complaint, call the DOE at 781-338-3737. To request mediation or a due process hearing call 781-338-6400. 

During mediation or a hearing, your child has the right to stay in his or her current school placement until your dispute is resolved; this is called "stay-put". There are some exceptions: if the student carries or possesses weapons, is involved is any drug-related activity, or if the current placement is likely to result in injury to the child or others, the student's educational placement can be changed. 

You may see entire the Parents' Rights Brochure at www.doe.mass.edu/sped or www.fcsn.org
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Making SSI Work: Tips for SSI Recipients Who Want to Work

Meet Katie:
Katie, 20 years old, is a senior at South High Community School in Worcester. An SSI recipient, Katie lives with her mother, father, and older brother. She is excited about graduation and is looking forward to her prom. Katie's vision for the future includes moving into her own apartment, getting married, learning more about computers, and working in an office. Last September, Katie got a job at an insurance company. With help from a job coach (a person who helps her learn the job), Katie organizes, alphabetizes, and files a variety of documents. Katie and her parents were afraid that she would lose her SSI benefits, particularly her Medicaid coverage. 

Can Katie continue to receive SSI and work without losing her benefits?
Yes! The Social Security Administration does allow SSI recipients to work, and also encourages them to take advantage of special programs to maximize their income. 

When should I worry about losing Medicaid?
Medicaid coverage can continue even if Katie's earnings become too high for an SSI cash payment. She would have to make more than $24,373 a year in order to lose Medicaid coverage. 

What happens to Katie's SSI check when she starts working?
Generally, when an SSI recipient starts to work, their SSI check is less. The higher the income, the lower the SSI checks. However, "exclusions" and "work incentives" can reduce the amount of income that is counted and allow the person to continue to receive higher SSI cash benefits. Up to $85 a month can be "deducted" from wages. After that, the SSI check is reduced $1 for every $2 earned. 

Applying the Earned and General Income Exclusions:
Katie receives $430 from SSI. Her income from work is $900 a month.

1. Subtract $85 from total wages ($900 MINUS $85 = $815) 
2. Divide the result by two: $815/2 = $407.50 
3. Subtract that from SSI amount ($430 MINUS $407.50= $22.50) 

Although Katie's SSI check was reduced to $22.50 a month, she still has her entire paycheck. As a result, her total monthly income went from $430 to $922.50. More importantly for Katie and her family, she continues to be fully covered by Medicaid.

Are there any Work Incentives specifically for students?
The Student Earned Income Exclusion (SEIE) allows students less than 22 years of age to exclude up to $400 a month from their earned income, until they reach a maximum of $1,620 a year. 

How did Katie apply for the Student Earned Income Exclusion? 
Katie's family called the local Social Security Office and asked for the person in charge of "Work Incentives". They explained that they wanted to report that Katie was working and also apply for the Student Earned Income Exclusion. Her family made an appointment, and was asked to bring:

1. A letter from the school stating that Katie was regularly attending school
2. A letter from her parents stating the date Katie began to work, how many hours per week she was working, and her wages
3. Pay stubs 

How do you calculate the Student Earned Income Exclusion?
Using Katie as an example: 

1. Subtract $400 (SEIE) from $900 (Katie's monthly wages) = $500 
2. Apply the general and earned income exclusions ($500-$85 = $415) 
3. Divide $415 by two = $207.50 (countable income) 
4. Subtract $207.50 from $430 (former SSI amount)= $222.50 (new SSI amount) 

How did the Student Earned Income Exclusion maximize Katie's income?
Before she started working, Katie received only $430 from SSI. After she started working and applied only the general and earned income exclusions, she was receiving $922.50. After applying Student Earned Income Exclusion, Katie is receiving $1,122.50 a month, and she is fully covered by Medicaid. Katie is proud to have a good job and to be able to pay for all her graduation expenses herself. 

This article is from Opening Doors, a collaborative project of the Institute for Community Inclusion, the Federation for Children with Special Needs, and the Disability Law Center. The purpose of the project is to increase the use of SSI work incentives. For more information, or for your local Social Security Office, call: 

The Social Security Administration (800) 772-1213

If you have questions related to SSI and SSI work incentives, or suggested topics for future newsletters, please contact: Elena Varney, Institute for Community Inclusion, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115; (617) 355-8022. 

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"Opportunity-to-learn" requirements are a key component of standards-based education reform. Standards-based education reform is the term used to describe nationwide efforts to improve education by first setting standards. Standards are seen as a way to raise student achievement by specifying what students should be learning and what teachers should be teaching. Schools are judged based on each student's achievement, with large-scale assessments focused on educational results. However, standards and assessments can bring about meaningful educational change only if combined with requirements that ensure that all students have access to the kind of learning opportunities they need to reach the standards.

Opportunity-to-learn requirements address strategies, services, and supports designed to ensure that all students have a fair chance to learn the knowledge and skills set forth in the state standards. Opportunity-to-learn requirements can include:

• Curriculum modified to achieve standards
• Instructional materials and methods
• Class size and structure
• Individual assistance
• Supportive services
• Teacher training
• Professional development 
• Adequate funding
• Teacher self-assessments and peer reviews

Opportunity-to-learn requirements and students' rights to quality education can be derived from most state constitutions and state education reform statutes. The highest courts of many states have said that the education clauses of their state constitutions define a constitutional right to education. These constitutional requirements have often been raised when a state's school finance system has been challenged in court. However, the constitutional right to a quality education is not limited to school finance. For example, in Kentucky, successful state constitutional litigation led the legislature to enact a detailed standards-based education reform law.

With the Individuals with Disabilities Education Act Amendments of 1997 (IDEA), Congress emphasized the provision of high quality education. Students with disabilities must be provided an opportunity to be involved and progress in the general curriculum, and must be provided with appropriate accommodations, modifications, and services consistent with their individual needs, to facilitate their involvement and progress. The Individualized Education Program (IEP) must specify the special education instruction, related services, and supplementary aids and services necessary to provide the student the opportunity, as appropriate, to learn what all other students are expected to learn. 

Under the IDEA Amendments of 1997, the IEP must include, for example, a statement of:

• The child's present level of educational performance, including how the student's disability affects involvement and progress in the general curriculum
• Measurable annual goals, including benchmarks or short-term objectives, that will enable the child to be involved and progress in the general curriculum 
• Special education and related services, and supplementary aids and services the student needs to be involved and progress in the general curriculum and reach other IEP goals
• Program modifications and supports for school personnel (teacher, aides, etc.) that are necessary to ensure that the student advances appropriately toward attaining the IEP goals and progresses in the general curriculum 
• Modifications in the administration of state or districtwide assessments of student achievement. (Footnote1)

Ed. Note: 
This article has been adapted from Every Single Student, a PEER publication of the Federation for Children with Special Needs. Information in this Fact Sheet is based on the PEER Information Brief, "Opportunity to Learn and Education Reform: Ensuring Access to Effective Education for All Students," by Kathleen B. Boundy, J.D., Center for Law and Education, Boston. If you would like to read more about "Opportunity to Learn," visit the Federation online at www.fcsn.org/peer, or call Carolyn Romano at the Federation at 617-236-7210. 

Footnote1. For Specific IEP content, see section 1414 of IDEA.

copyright 1999 The Federation for Children with Special Needs, Inc. and Center for Law and Education. All Rights Reserved. This publication has been reviewed and approved by the U.S. Department of Education, Office of Special Education and Rehabilitative Services (OSERS). Funding for this publication was provided by the Office of Special Education Programs, OSERS, U.S. Department of Education, through grant #H029K50208.
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Health News at the Federation for Children with Special Needs
 

Making the Most of a 10 Minute Office Visit
Last year, Family TIES had the opportunity to host a series of "Information Exchange" workshops across the state. In the West, Dr. Brian Dempsey shared these tips about how to make your office visit more productive.

• Organize yourself before the appointment. Write down your questions and concerns so you will remember to ask.
• If you have paperwork to be filled out, (school physical, nursing orders, etc.) understand that the doctor cannot do that during a ten-minute visit. Be prepared to leave the papers and give the doctor a few days to complete them.
• Realize that a ten-minute visit means ten minutes. Don't schedule this type of visit if you have major issues or a subject that needs more time to discuss.
• If you need a longer appointment, try to book later in the day, perhaps the doctor's last appointment 
• When you have an appointment for one of your children, do not take along the rest "just for the doctor to take a quick look at." Make separate appointments for each child. ¥ Be prepared to answer the doctor's questions precisely. "Since Tuesday" is much more helpful than, "oh, a few days, I guessÉ" 
• Write down answers to your questions as you go over them with your doctor. This will save you both time instead of having to call him back because you forgot was said.
• If you make your appointment for 10am, be there on time, otherwise your appointment will be rushed and you will leave feeling like you didn't get the answers you needed. 

For more information on parent-professional relationships, or on upcoming workshops, call your Family TIES Coordinator at 1-800-905-TIES.
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Did you know...

On October 17th, the President signed the Children's Health Act into law. The new law includes provisions for research grants and new centers for autism, Fragile X Syndrome, diabetes, asthma, hearing loss, and epilepsy. It also includes a new center on Birth defects and Developmental Disabilities at the Center for Disease Control as well as provisions for a new study on the effects of PKU.

The Children's Health Insurance Program (CHIP) expands MassHealth eligibility to all children living in families with incomes up to 200% of the poverty level. CHIP was created with Federal Funds as part of a national children's health insurance initiative. 

To determine whether a child is eligible for MassHealth/Medicaid under these new expanded guidelines, call MassHealth at 1-800-841-2900. 

Children who are NOT eligible for CHIP or other MassHealth benefits may be eligible for the Children's Medical Security Plan (CMSP). Every uninsured child and teen in Massachusetts can get health care coverage at little or no cost. Children aged 18 and younger can enroll in a program with either full coverage or only primary and preventive care. The type of coverage depends on the family's income. Immigration status does not affect the child's eligibility. 

To determine eligibility for CMSP, call 1-800-909-2677 (voice/MA only) or 800-497-4648 (TTY/MA only).

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Help Us Help You: Join the Federation's Fall Campaign

Dear Friend,

The year 2000 has been a historic year for Special Education in Massachusetts. As you know, the State legislature passed 50 significant changes to Chapter 766, including the roll back of the "Maximum Feasible Benefit" standard, after years of parent advocacy to preserve it. Fortunately, many of the other changes have maintained or improved requirements under the law. Though we are disappointed, we have won many important battles. Our advocacy efforts are strong because of you who have done so much to maintain the rights of children with special needs.

It has required a huge effort to keep up with the changes that have taken place. Hopefully you have found our website and the articles in our quarterly publication, NewsLine, helpful in staying on top of the issues. We have regularly updated the latest developments and made sure the most recent documents were available to all. This spring, we had as many as 1,500 visits per day to our site. Our current circulation of NewsLine has increased to over 21,000 readers. Eighty percent of our readers are parents, but organizations, institutions, and professionals across Massachusetts and the United States also subscribe. Our parent calls, more complex than ever, have nearly doubled this year. We have offered twice as many workshops as in previous years and have seen at least a 30% increase in attendance per session. To say our staff and volunteers have been working hard on your behalf is an understatement! 

Even though our work has dramatically increased, our funding has remained the same. The special education advocacy work of the Federation is not supported through any specific grant. It is only made possible by your donations. Last year we were pleased that nearly 300 individuals and families responded with generous contributions, totaling just under $35,000.

As we look ahead we know that 200l will be equally as important as we continue our advocacy efforts. New contributions to the Federation's Fall Campaign Fund, and increases in the amounts contributed by previous donors -- of any amount -- will encourage us all. 

Thank you in advance and best wishes on a successful school year.

Sincerely, 
Richard J. Robison, Executive Director 
Daniel T.S. Heffernan, President
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Looking for Parents of Preschoolers to Participate in a Survey

If your preschool child receives itinerant services and you would like to help define the roles of early childhood teachers who move from classroom to classroom or who may travel from school to school, Project DIRECT is seeking your input. Project DIRECT, at the University of Toledo, in Ohio, is conducting a study to define the roles and responsibilities of itinerant Early Childhood Special Education teachers. 

The Project is looking for:

• Parents or guardians of preschool children (age 3-5) who are on an IEP,
• Who attend community-based child care or preschool programs,
• Who are CURRENTLY served by itinerant teachers,
• Or who received itinerant services in school year '99-'00.

The researchers anticipate three rounds of questionnaires. It will take approximately 45 minutes to complete the first questionnaire and about 20 minutes for each additional round. Participants will receive a $100 stipend at the conclusion of the study. 

If you would like more information, or would like to participate, please call Lynn Hale of Project DIRECT at their toll-free number, 877-417-1791. 
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The Federation Travels to Brazil
by Sandy Blanes, Portuguese Outreach Specialist
When I was hired by the Federation to coordinate programs for Portuguese-speaking families, I never imagined my outreach efforts would extend all the way to Brazil. The U.S. Department of Education (U.S.D.O.E) became aware of our work with the Portuguese community when they read the Federation's Annual Report. As a result, Judy Heumann, the Assistant Secretary to the U.S.D.O.E., invited me to be part of a presentation she and others were giving at the 5-day Rio International Congress for Rehabilitation. The D.O.E. in Brazil invited the Special Education Directors from all 37 Brazilian states, teachers, other professionals and parents to attend this conference and share their dreams and hopes for inclusion in their country as well as to learn about inclusion efforts in other countries. 

Judy Heumann, Delia Pompa from the Office of Bilingual Education and others presented a course entitled "Inclusion in Public Schools." They gave an overview of the History of Special Education in the US and I shared my expertise and gave the "parent perspective" about inclusion and the importance of parent participation in inclusion in local public schools. In addition to being able to present in Portuguese, to the relief of those wearing headphones for translations all day long, I had also sacrificed one of my suitcase allotments to bring in packets of materials about the Federation and the Parent's Place instead of additional clothing. I had plenty of room for gifts and souvenirs as conference attendees gratefully took all 70 pounds of materials. Our packets now sit on the desks of Special Education Directors in all the Brazilian states. Our outreach to Brazil continues as I still receive additional e-mail requests for more information. 

We have a ways to go to achieve accessibility and accommodations here in the states, but you are instantly thrown back about 30 years as you try to negotiate and the streets and access the shops, restaurants, and tourist sights in Brazil. Judy's husband, after hitting a hole in a ramp with his wheelchair, was thrown face down in the middle of the street and hurt his hand. He also made an unforgettable "climb" up the Sugar Loaf mountain, an inaccessible site. He jumped from his wheelchair into the tram, supported by his crutches, as there was no way to wheel the chair onto the tram and secure it. His determination to get to the top was a lesson in courage for the many tourists who shared the tram ride with him. 

The opportunity to attend this Congress was exciting because the Federation is now involved in inclusion efforts at an international level. This opportunity also had great personal meaning for me, and was a homecoming of sorts, as I had lived in Brazil for 16 years. I first went there as a young mom with three children, only to return here when my eighth child, Nelly, was born with special health needs and needed medical attention that I could only get for her in the states. Nelly has since passed away. I was still mourning her when I began working at the Federation and to this day, I am thankful for how special my co-workers made me feel. Usually the child gets all the special treatment, but at the Federation they realize that everyone has special needs.

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Access in Action: A Profile

Jessica is a volunteer guide with Outdoor Explorations. She helps to run programs for people with and without disabilities, ranging from environmental service projects in urban parks and gardens to three-day adventure trips kayaking off the coast of Maine. The fact that Jessica has a cognitive disability helps give her a unique perspective about the impact of Outdoor Explorations (OE). She has come to be a powerful role model for people in the OE community.

In 1991, Carolyn Bess started OE, hoping to create community experiences where people of all abilities could learn together by participating in environmental awareness projects or through outdoor experiences. In Jessica's case, Carolyn's vision has been more than realized. Prior to joining the OE team, Jessica had little guide experience. She enjoyed outdoor activities, but was not aware of any program that would allow her to get involved in a leadership role. When asked if she had prior experience or opportunities in environmental and community leadership, she replied simply, "Not really." This has since changed, and both she and OE have benefited as a result of her participation. 

Jessica participated in OE events for 2 years prior to becoming a guide. Her enthusiasm and her empathetic and compassionate nature caught the attention of the other OE guides. They asked Jessica if she was interested in applying to be a volunteer. Jessica's response was immediate, "I said I would. I wanted to stick with the program because I liked it a lot and I liked helping people with disabilities."

On the first day of volunteer training, Jessica was apprehensive, but realized the same trust and camaraderie she felt as a participant in past OE programs was still there. Jessica registered at the table, picked up her volunteer manual and found a seat. She was concerned that a person like her -- with a cognitive disability -- would not be a good volunteer leader. However, she quickly realized the diversity of the others in attendance. Two had guide dogs while three others used wheelchairs. With the support of OE's program staff, Jessica's confidence grew. She successfully completed the Volunteer Leadership Training and became an Outdoor Explorations guide -- ready to help lead her first program.

That was three years ago. Since that time, Jessica has proved to be an invaluable part of the OE family. She has helped supervise numerous Skill Clinics along with several more complex and involved Adventure Trips. OE has become a stronger and more inclusive organization because of Jessica's involvement. She sums up the effects of OE's inclusive programming, "It helps to see how people who use wheelchairs and people who are blind get around in life." And for people who have disabilities? "Well," she muses, "I think it helps people who have disabilities get out in general instead of just staying at home. It helps them to have friends also." She continued enthusiastically, "I've made some friends through OE. I get to see them each time I go back. It's awesome." We think so too.

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The Annual Advisory Board Meeting for the Parent/Professional Advocacy League (PAL) was held on October 5. This year's theme, "Meeting the Challenge," was an opportunity for the PAL network to celebrate the successes of the past year. Worcester Communities of Care helped sponsor this year's event and we extend our many thanks to all those who made it possible.

Ross Greene gave a keynote address about explosive/noncompliant children and adolescents. There was a presentation entitled, "Update on Special Education Laws and Regulations," by Cindy Nicholls, the Education Specialist at Worcester Communities of Care. Jesse Davis and Edan Healey were part of a youth panel discussion about "What Works/What Doesn't." After an evening meal, awards were presented to the hard-working family advocates in the PAL network. Special Community awards were given to Alice Dembner of the Boston Globe, Senator Therese Murray, Tim Sindelar of the Disability Law Center, John Willett, a parent, and Cheryl Califano, parent and advocate. Each of these individuals has made a significant contribution to helping to improve the lives of children and adolescents with emotional and behavioral disabilities.

In other news, PAL was awarded a challenge match grant from the Boston Foundation to help promote a Massachusetts Agenda for Children's Mental Health. The Foundation will match each dollar contributed to our organization, to a maximum of $15,000.
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Violence Prevention

Violence Prevention Parents' PLACE--Parents Learning About Children's Education--is the Massachusetts statewide Parent Information and Resource Center (PIRC), housed at the Federation. Parents' PLACE provides information and training to support parents, educators, and others as they encourage and promote children's healthy growth, development, and learning. 

Parents' PLACE recently received additional support from the U.S. Department of Education Goals 2000 office to conduct violence prevention activities around the state. These activities will include workshops for families about violence prevention and awareness, a half-day conference with the Youth Advocacy Project of Roxbury, and dissemination of 10,000 copies of Bright Futures for Families: What You Can Do to Prevent Violence. In addition, Parents' PLACE will publish a special edition of Parents' PLACE Bulletin, devoted to violence prevention and awareness, in English, Spanish, and Portuguese. For more information, or for a copy of the Bright Futures publication, contact Parents' PLACE at 1-877-471-0980.
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