We’re moving!
Federation Offices to Relocate in April ’99
We’re growing and we need more room!  The Federation is pleased to announce that in April we will be moving to larger quarters at the Renaissance Park Building at Ruggles Center (1135 Tremont St., Boston). Owned by Northeastern University, Renaissance Park is located next to the new Boston police headquarters and is adjacent to both the Orange Line (Ruggles Station) and the Commuter Rail.

Our new, fully accessible space will house 32 Federation staff members (15 other Federation staff are in regional offices and DPH facilities across the state), and contains a library/conference room and a training center with seating for up to 50 people. Onsite parking is available.  An open houseis being planned for the Spring.  See you there! 

The Federation gratefully acknowledges Office Environments of New England for their donation of ten new work stations.  We are still seeking furnishing and equipment for our training center and conference room and for carpeting throughout.  If you can help, please call Brooke at the Federation Development Office, (617) 482-2915 x184.
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Federation Launches Massachusetts Autism Project
The Federation has launched a new Massachusetts Autism Project jointly funded by the Massachusetts Department of Education (DOE) and Department of Public Health (DPH).  Headed by Martha Ziegler, the project will conduct a comprehensive statewide needs assessment and then, based on the findings, will develop a plan for filling gaps in services.  The project will also develop a comprehensive database of information about autism in the state.  Several well-known consultants are assisting and a broadly representative Advisory Committee is being convened.

New Transition Initiatives 
The period of transition from school to work, post-secondary education, and life in the community is often a difficult time for students with disabilities.  The Federation is pleased to announce several new transition initiatives to increase opportunities for students academically, socially, and in other areas that will affect their adult lives.

First, through contracts with both the Mass. Department of Education (DOE) and the Department of Public Health (DPH), the Federation now has funding for two half-time Transition Specialists.  One will serve families in eastern Mass, and one will serve families in the central and western parts of the state.  The Transition Specialists will be parents of students currently making the transition from school to work, post-secondary education, and/or life in the community.  The Transition Specialists will be responsible for coordinating training activities with the Mass. Organization of Educational Collaboratives (MOEC) for professionals and parents.  They will also provide training and technical assistance in transition specifically for parents.  To date, one of these positions is filled.  The Federation is very pleased to announce that Terri McLaughlin, former Federation Board member, will serve as Transition Specialist for Eastern Massachusetts.

The Massachusetts Initiative for Youth with Disabilities (MIYD), an initiative of the Department of Public Health, provides funding for a Transition Specialist to address the need for more inclusive social and recreational opportunities for teens in the New Bedford area. The Transition Specialist will work with community members and organizations to identify community-based opportunities and explore ways to make them more inclusive.  Sandy Blanes, the Federation’s Coordinator of Outreach to Portuguese-speaking families, will serve as the Transition Specialist who will coordinate activities for this initiative.

The Federation is also collaborating with the Massachusetts Institute on Community Inclusion (ICI) on three projects related to transition age youth with disabilities.  For the Postsecondary Education Options Project, the Federation and ICI are working with five school districts and five community colleges to develop non-segregated, typical post-secondary options for youth with disabilities ages 17 to 22.  Using peer-mentoring and student initiated learning experiences, the Project aims to build learning communities where supports and services for all students will be enhanced.  In addition to working with schools, this Project will also assist some individual students with severe disabilities to successfully complete community college.  Training for families will emphasize the importance of age-appropriate options for teens and young adults with disabilities.  Federation staff member Terri McLaughlin will serve as Transition Specialist on this Project.

Integrating Curriculum for All Students is a research project focusing on educating transition age students with disabilities in inclusive settings.  Staff from the Federation and ICI are working with teachers and staff from two urban high schools to adjust the general curriculum in regular ninth grade classrooms.  The goal is to improve the career planning process for all students by adjusting the curriculum to address career related, as well as academic, skills in the regular education classroom.  The research will study the effectiveness of an integrated curriculum that offers students of all abilities (including students with severe disabilities) the highest quality education and the best preparation for adult life.  Once the curriculum is integrated to include career related skills, a blueprint based on the activities used by each district will be developed to promote replication in other school districts.  There is also a parent training component of this project.  Federation staff member Janet Vohs will participate on this project.

In addition to the above transition activities, the Federation is now entering the second year of a partnership with ICI to provide support and technical assistance to families in the area of Supplemental Security Income (SSI) specifically as it relates to youth 18 and over.  Federation staff member John Sullivan will participate on this project.

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On the State Front…
As NewsLine goes to press, monitors from the Office of Special Education Programs (OSEP), U. S. Department of Education, have just completed their preliminary visit to Massachusetts, having conducted focus groups at various locations throughout the state.  They heard numerous stories of parents’ difficulties in getting the law implemented on behalf of their children.  A quick, informal survey indicated that parents are much happier with the state’s implementation of Part C, the Early Intervention Program (see page 6), than they are with Part B, the section of the law covering students ages 3 to 22 (see pages 8 and 9).

A conversation this week with a local director of special education revealed that she attaches a meaning to the word “compliance” that is different from that understood by parents, including me.  She indicated that her system is in compliance as long as the state department of education does not explicitly declare it in noncompliance!  Am I misunderstanding the meaning of the word “is”?

She also indicated that her town did not yet need to implement the 1997 changes in IDEA because “the law is not finished yet.”  What she must mean is that she does not need to comply with the law until the Regulations are promulgated.  She is overlooking the fact that the statute itself lists certain dates for various provisions becoming effective, most of which were on or before July 1, 1998.  The law does not qualify these deadlines with such a phrase as “unless the Regulations have not yet been promulgated.”

I have a suspicion that this administrator is not unique.  With this kind of misinformation or lack of understanding on the part of a local administrator, it is no wonder that parents —who seem to be better and better informed—get frustrated and discouraged.

On the National Front…

President Clinton Announces New Medicaid Regulation  
During a speech at the International Brotherhood of Electrical Workers on September 17, President Clinton announced that the Department of Health and Human Services has completed a new regulation that would give more than 20 million Medicaid beneficiaries in managed care plans the patient protections they deserve.  The new regulation would bring the Medicaid program into compliance with the Patients’ Bill of Rights.  This proposed regulation would require managed care plans in all 50 states to provide needed patient protections to Medicaid beneficiaries, including access to specialists; anti-gag rules to ensure that health professionals can discuss all medical treatment options with their patients; access to providers for women’s health services; access to emergency room services when and where the need arises; disclosure of clear, up-to-date information about benefits, plan operations, and protections; and a timely internal appeals process as well as an independent external appeals process.  (from National Council on Disability, NCD Bulletin, 9/98)

New WIIA Bill to be Introduced in January
Early in January, soon after the new Congress convenes, Senators Jeffords (VT) and Kennedy (MA) will introduce their latest version of the Work Incentives Improvement Act (WIIA) for people with disabilities.  This bill came very close to passage in the final days of the 105th Congress and advocates are optimistic now.  Various provisions would increase the incentives for adults on SSI, SSDI, and Survivor’s Benefits to engage in gainful employment, with added protections for their health care benefits.

Plans are being made for rallies in Washington, Vermont, and Boston when the bill is introduced.  Watch the Federation web page (www.fcsn.org) for details.
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From the Executive Director  
"Mom That's My Teacher!"

A crowd of children and their parents were searching the video store shelves as Amy and her mother walked in that Friday afternoon.  Having just come from her after school job, Amy was intent on making a quick selection and heading home. As she moved through the store, Amy, a high schooler with Down syndrome, noticed a small girl about kindergarten age who was with her mom.  The two girls’ eyes met.  Amy moved quickly toward the girl, and before either of the Moms could prevent it, the girls embraced.  Amy’s mother could feel embarrassment rising in her cheeks.  She began to pull Amy away and prepared to chastise her for “hugging too much.”  After all, isn’t it common knowledge that children with Down syndrome hug too much?  

The little girl’s mother moved in to “rescue” her precious one from the unanticipated advances of the inappropriate teenager.  Fortunately, each parent, fearful of making even more of a scene, held back for a moment.  Their brief hesitation allowed the encounter to come to a natural conclusion.  The embrace ended.  Amy asked the girl about the video she had chosen.  They exchanged goodbyes and went their separate ways. 

As they moved away from each other, the little girl looked at her mother whose face, by now, wore the question, “Haven’t I told you not to speak to strangers?”  Meanwhile, Amy, noting her own mother’s embarrassment, said,  “That’s Sherrie!  She’s from the Afterschool Program.”  (Afterschool is where Amy works as a teacher’s assistant two days a week.)

Then it happened!  Sherrie announced in a loud excited voice,  “Mom, that’s Amy.  She’s my teacher!”  In fact, Amy had just read a story to Sherrie’s group earlier that afternoon.  

What does this chance meeting reveal? 

• A little girl saw her teacher and was filled with excitement and joy.  Either she didn’t see Down syndrome or it didn’t hold the same meaning it did for the adults.  There was no embarrassment or discomfort on her part.  She just knew how important she felt to be recognized by her caring teacher in a public place.  

• A teenager with Down syndrome can do what every other teenager does: hold down an afterschool job and learn the importance and value of being a contributing member of her community.  

• The vision of special education laws that calls for students with disabilities to be part of their school communities is often seen in real life in wonderful and surprising ways. 

• When transition requirements are fulfilled through real jobs for students with disabilities beginning in the teen years, the power and promise of special education laws are demonstrated. 

As we enter a new year, it is important to remember that our children can often be our most profound teachers.  Amy and Sherrie’s ability to operate from their own experiences rather than from limiting assumptions challenges us to do the same.  I wish you a great year full of the delights and surprises that come from seeing with new eyes and being open to possibility.  Happy New Year!

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Ask Eileen 
Empowerment Through Information 
by Eileen Souza, Information Specialist 
This is a column appearing occasionally in NewsLine that highlights some of the questions that Eileen Souza and the other Information Specialists are most frequently asked. 

Dear Eileen:
My child has attended a parochial school for the last two years and has received special education from the local public school.  Now the public school tells me they will no longer provide the services that the Team agreed he needs.  Can the public school do that?
—Concerned Parent in Massachusetts

Good question. This is certainly a confusing issue which I will try to clarify for you. First of all, if your child was placed in a private school (which includes parochial schools) by the public school district in order to provide the services in your child’s IEP, then the school district may not stop providing services to your child without convening a Team meeting to discuss proposed changes (which the Team must then agree upon).

If, however, you made the decision to place your child in the private school yourself (i.e., the decision was not one recommended by the public school—this is called a “unilateral placement”), then the public school’s responsibility to your child is not as simple.  Instead of an “individual entitlement” to special education services for your child, the federal special education law (IDEA, the Individuals with Disabilities Education Act), requires that school districts develop a “Plan for Services” for eligible private school students.

This Plan must state that the local school district will spend at least a proportional share of the funds it receives from the federal government on special education services for the eligible students enrolled in the private school.  For example, say a public school district has 10 students eligible for special education services who are enrolled in a parochial school.  This year, the federal government gave Massachusetts school districts $480 for each eligible student. Therefore, the school district must spend at least 10 x $480, or at least $4,800, on special education services for these parochial school students during the school year in order to meet its obligation under federal law.  

It is important, therefore, for you to look at your child’s proposed IEP outlining the services he would receive if enrolled in the public school and compare it to the district’s Plan for Services to eligible students in private schools. You will then have full information upon which to base your decision about whether you want your child to stay in the parochial school.  

Things to consider:  The types of services your child needs may or may not be included in this Plan.  The public school may spend more than the amount required by law, but is not required to do so.  The law is unclear about whether $480 must be spent on each student or whether one student may receive more than another.  Note also that once the public school has determined that your child is eligible for special education services, it must convene Team meetings and develop an IEP annually that represents the services your child would receive if he were enrolled in the public schools.
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Dybwad Fellow Visits Australia
Federation staff member Janet Vohs recently traveled to Australia on a Rosemary F. Dybwad International Fellowship.  As a Dybwad scholar, Janet’s primary focus was on inclusion and how Facilitated Communication (FC) is being used for students with disabilities.

FC is a form of augmentative communication in which a partner called a “facilitator” provides physical assistance to enable a communication aid user to access a communication device to construct messages.  Janet and her team members, Rita and Bob Rubin of Whittier, Calif., visited classrooms, speech clinics, parent groups, and met with FC users and their parents.  

According to Janet, the highlight of the journey was an intensive week with Rosemary Crossley, the international leader in FC.  “Rosemary opened her home, her heart, and her vast experience and knowledge to us,” Janet said.  “In her work she demonstrated a rigorous, no-nonsense, yet compassionate, commitment to her clients’ authentic communication, whether it be FC or other type of assistive communication.  We are all excited by what we saw and learned.”  For example, among the FC users Janet met were a young  man with Down syndrome who uses FC at business college, young women with autism who are attending college, and youngsters with autism who are attending regular classes.

Janet and the Rubins are parents of young adults with disabilities who use FC to communicate. (The Rubins’ daughter, Sue, gave the keynote address at this year’s TASH conference in Seattle.) 

The Federation congratulates Janet on being named a Dybwad Fellow. The Fellowship is an enduring expression of Rosemary Dybwad’s life work of fostering an international network of advocates for people with disabilities learning from each other.
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Parents of children with special educational needs can easily be overwhelmed by paper in a short time. From the beginning of school to the time their child either graduates or “ages out” of entitlement to special education services, the accumulation of IEP’s, evaluations, progress reports, correspondence, notes,  journals, samples of the child’s work, medical records, and so forth can fill several drawers of a file cabinet or several feet of shelf space. 

Some may be tempted to throw out documents when they become too cumbersome to manage easily, but it may be a mistake to do so. Even the oldest documents in a child’s history can sometimes help parents make a case for increased or different services for their child under IDEA. 

Parents should learn the relative importance of various kinds of documents and organize them sensibly. With this in mind, I’d like to set out a few guidelines for managing documents under IDEA.

What documents should you keep?
Here is a list of the kinds of documents that will be generated during the educational life of a child with special educational needs. You should keep them all! 

You should also go to your child’s school or the special education office occasionally to inspect your child’s student records to be sure that you have all the documents the school has and to see if there are documents in your possession that have been omitted from the files. You should find out about your state’s rules and regulations for accessing your child’s records. In general, all states must provide access under a federal law called the Buckley Amendment (the Family Educational Rights and Privacy Act of 1974, 20 U.S.C. §§ 1221, 1232g). Typically, with reasonable notice you will have the right to see the records, wherever they may be kept, and to have copies provided to you, at a reasonable copying charge. You may also have the right to request that a document be removed, with an appeal process if that request is denied, and the right to place a document next to the one you wish to have removed with your comments or with additional information. 

A general comment: Except in rare cases, you don’t need to keep drafts of any documents, and if you do, those drafts may lead to confusion if you ever need to seek services for your child through the due process system. This is one area where you can and most often should lighten your document load. 

1. Individualized Educational Programs (IEP’s) and other official service plans applying to your child. In addition to IEP’s, these might include, for example, Individualized Family Service Plans (IFSP). These are service plans that govern early intervention programs for children before they are old enough to receive special education services or plans that are written by agencies other than the local school system such as a department of mental health or mental retardation. 

2. Evaluations — both those performed by the school system and those written by independent evaluators. Depending on the child, these might include: Educational; psychological and/or neuropsychological; speech and language; occupational therapy; physical therapy, and other evaluations. 

3. Medical records. You probably don’t need to keep all medical records with your child’s IDEA documents — only those that bear on the disability or disabilities that affect his/her ability to learn or to access school programs and facilities. As with any other kind of document, when in doubt, keep it! 

4. Progress reports and report cards — the formal documents in which the school system periodically describes how your child is doing. 

5. Standardized test results. School systems often administer standardized tests, such as the California Achievement Tests, to all students to measure their skill development compared to all students taking the test. Such tests can provide a helpful objective comparison to the more subjective reports of progress provided by a child’s teachers. 

6. Notes from the teacher to the parents or from the parent to the teacher, about the child’s progress or behavior, and/or journal entries between the child’s service providers and parents. Sometimes the occasional notes from a concerned teacher tell a different story than the formal report the same teacher develops at the request of his/her supervisor when the TEAM convenes. 

7. Correspondence — Any correspondence between the parents and the teacher(s), special education administrators, TEAM chairpersons, evaluators, etc. pertaining to the child. Don’t forget emails: print them out and include them in your correspondence file. Also, correspondence from the school system addressed to parents generally or to all special education parents describing issues that affect the child: for example, letters describing new programs or changes in programs or services or describing school system policies around children with special education needs or budget issues. 

Note: Do you use certified mail, return receipt requested, when you send letters or notices to the school system? Sometimes you do need to have the kind of record of delivery that certified mail would give you, but more often, using that system merely adds unnecessary delay to your delivery of the letter or notice. It is better to hand-deliver the document and, if you are concerned that it might get lost, ask for a receipt from the secretary or person you hand it to. (Remember, too, that in most courts and administrative forums, a letter mailed in ordinary first-class mail is presumed to have been delivered within three days of its mailing.) 

8. The parents’ notes or minutes of conversations or meetings with school personnel, evaluators, the child’s TEAM, or any other interactions bearing on the child’s program or needs. We advise parents to be certain to take excellent notes at key meetings or, better yet, to have someone with them whose only task is to take such notes, especially at TEAM meetings. Such notes can help enormously when, months later, parents try to recall exactly what various people said or what agreements were reached. 

Note: Do you have a right to tape TEAM meetings? Should you tape meetings? The answer to both of these questions is “probably not” in most instances. Under the laws pertaining to discrimination on the basis of handicap you may have a right to tape a meeting if that is necessary to accommodate a disability (for example, if one or both parents have a language processing disorder). You may also have a right to tape if the meeting is conducted in a language other than the parents’ first language. Generally, though, no right to tape a meeting has been determined to exist under IDEA. Ordinarily, if you ask in advance to tape a TEAM meeting, a school system should permit you to do so as a courtesy and most likely they will also tape the meeting. You need to consider, however, that having a tape recorder present may inhibit the participants and/or create a feeling of hostility at the meeting. Again, it is usually preferable simply to have someone take excellent notes. 

9. Any documents having to do with discipline and/or behavioral concerns. These include, for example, notices of detentions and suspensions (both in-school and out-of-school suspensions), letters describing the concerns of service providers or school administrators about behaviors, records of behavioral assessments, and records of behavioral plans for addressing behavioral issues. 

10. Formal notices of meetings scheduled to discuss your child. You should develop the habit of noting on the top of any such document the date on which you receive it, since the question of whether a school system has met time requirements is sometimes important under IDEA. (Note that it is sometimes a good idea to keep copies of the envelopes in which such notices arrive: check the date of the notice or letter and the date of the postmark — if the postmark is later than the date on the notice, that fact could be significant.) 

11. Samples of schoolwork. You don’t need to keep every scrap of writing or drawing your child produces for this purpose, but it sometimes is helpful to keep examples from year to year which can be compared to show how much progress your child is making in various academic areas. 

12. Invoices and cancelled checks relating to services that you provide on your own for your child relating to his/her educational development. For example, if you pay for an independent speech and language pathologist to provide an hour per week of therapy to supplement the school system’s services, keep a record and evidence of your payments for that service. Eventually, you may seek reimbursement for that expense if you can prove that it was necessary because the school’s services were insufficient to enable your child to progress effectively. 

13. Public documents that help explain how your school system works with children like yours. These might include, for example, newspaper articles describing pronouncements by special education administrators, school committee members, or superintendents talking about the reorganization of special education programs, or cutting expenses, or using new teaching approaches. 
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Federation Offers Comments on EI to Feds 
In November and December, the U.S. Department of Education, Office of Special Education Programs (OSEP) wrapped up the first of two visits to Massachusetts to monitor the state’s compliance with the Individuals with Disabilities Education Act (IDEA), the federal special education law.  OSEP will use the information gathered at these meetings to identify which issues and school districts warrant further investigation when they return in February.  (See related article.)

During this visit, OSEP also held meetings to gather information about Massachusetts compliance with early intervention (EI) provisions of IDEA.  In Massachusetts, the Department of Public Health (DPH) is the lead agency overseeing the state’s EI program.  In addition to submitting written comments, the Federation maintained a strong presence at the meetings.  The Federation noted the following strengths of the Massachusetts EI system in its comments to OSEP:

1. Family Participation: The state has shown a strong pattern of seeking, training, and supporting families to participate in programs, policy-making, and leadership, at both state and local levels. 

2. Interagency Collaboration: DPH supports and is persistent in pursing interagency collaboration in policy and programs at state and local levels.

3. Funding: Other sources of funding expand EI services and supports, in particular insurance and Medicaid.

4. Information and Data: The relatively new Early Intervention Information System (EIIS) has great potential for: making data-based program and system decisions, identifying who is being reached and the services provided, and identifying strengths and weaknesses to guide improvement efforts.

5. Personnel Standards: The certification process for EI personnel builds capacity and professionalism resulting in better services and supports for families and children.

The Federation also cited the following areas of concern:

1.  Services in Natural Environments:

• There is no state policy to regulate or guide delivery of services and supports in natural environments.
• There is insufficient education and, therefore, understanding about the philosophy and research supporting the use of natural environments, and why this approach is desirable and constitutes best practice.
• There is little understanding of what natural environments are and how to provide services and supports in natural environments.
• Many families are unaware of the efficacy and benefits to their children of receiving services and supports in natural
environments. 
• There are fiscal disincentives, including rate structure, for providing services and supports in natural environments.

2.  Procedural Safeguards:

Despite the fact that the EI due process system (that is, conflict resolution and mediation) is family friendly and effective, generally families are not aware of procedural safeguards, including procedures for, and their right to, due process.  

3.  Interagency Collaboration:

Coordination of services from the Departments of Mental Retardation, Mental Health, and Social Services needs improvement.  In addition, despite a strong interagency agreement between the DPH and DOE, local implementation is inconsistent.  In areas where there is coordination, the transition process proceeded smoothly.  More often, parents reported that their local educational agencies had not met with them by the time their children were 2 years, 9 months, as required, and that services were not in place by the time their children turned three.

Staff at the Federation will continue to work with DPH on these areas of concern. Ruth-Ann Rasbold is on the Steering Committee of Stakeholders who will follow-up the monitoring visits with a strategic plan.  Evelyn Hausslein is on the statewide Interagency Coordinating Council which advises DPH.

Turning Three Workshop
The “Turning Three” workshop is for parents and early intervention personnel who are getting ready to move a child from early intervention services to pre-school services.  This workshop describes entry criteria and the procedure for determining eligibility for pre-school special education services.  Topics such as planning for transitions and the differences between early intervention and preschool special education requirements are included.

Other issues such as choosing an appropriate early childhood setting and finding resources in the community may also be covered as time permits and the audience wishes.

The Federation’s Early Childhood Unit will offer this workshop in six regions across the state this Spring.  (See schedule, next page.) The Federation’s Early Intervention Parent Leadership Project is hosting these sessions and regional representatives from the Federation’s Family TIES Project will be available. These workshops are opportunities for parents and providers of early childhood services to gather information and exchange resources.

Certificates of attendance listing appropriate competencies for early intervention providers and educators will be sent to all who attend.
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The U.S. Department of Education, Office of Special Education Programs (OSEP), recently held meetings at four locations across Massachusetts to gather information about how special education is provided here.  Based on the concerns raised at these meetings, OSEP monitors will return in February to focus on specific school districts’  compliance with the Individuals with Disabilities Education Act (IDEA), the federal special education law. 

The Federation, along with Mass. Advocacy Center and Disability Law Center, developed a survey (in English, Spanish, and Portuguese) to learn what Massachusetts families think about the special education their children receive.  Over 400 families from 82 communities responded. Their responses were compiled, analyzed, and distributed at the OSEP meetings.

Survey responses revealed the following areas of concern:

• non-compliance with IEPs, 
• Team meeting decision making, 
• least restrictive environment (LRE) and inclusion, 
• access to the general curriculum, 
• services to families who speak a language other than English in the home,
• continuity of education for children in state custody,  
• secondary education transition plans and services, and
• effectiveness of Department of Education’s (DOE) Complaint Resolution System.

In its report to OSEP, the Federation derived information from the survey, a review of the past 14 months of phone calls, and the Massachusetts Comprehensive Assessment System (MCAS) results. The following summary of the report is organized in response to OSEP’s questions.

1. Do special education and related services promote a high quality education?  
Only 58% of parents responded that their child receives all the services found necessary by their Team. Parents wrote that teachers were unaware that children had IEPs, that IEPs were disregarded, and that related services were provided by unqualified personnel or disregarded.

2. Do students have access to the general curriculum in the least restrictive environment? 
Only 51% of parents felt that the Team considered the full range of support services and accommodations necessary for their child to participate in regular education classes and non-academic activities with nondisabled children. Some children have access to regular education gym, art, or lunch, but still have no access to the general academic curriculum.  Another measure of students’ access to the general curriculum is performance on the statewide MCAS. DOE reported that 97% of students with disabilities received failing or needing improvement scores, a rate double that of students without disabilities.

3. Are students age 14 and older being prepared to transition successfully to work, independent living, or additional education services? 
71% of parents with children over the age of 14 reported that they did not receive or did not know if they received a statement of transition services in their child’s IEP.   

4. Are parents involved in the education of their children?
Almost 60% of parents said that they have no real input or don’t know if they have input into the IEP. Most felt unclear about the services their child should receive. 23% of parents were left out of the final Team decisions — school personnel not at the meeting made the decisions.

5. Are there administrative barriers to appropriate services?

Funding. Some school systems have simply discontinued special education services due to inadequate funding. Other parents wrote that school systems have ceased special education to groups of children, e.g., students with Learning Disabilities or students in 11th and 12th grade.

Complaint Resolution/Due Process System. Local districts provide insufficient information about DOE’s Problem Resolution System and appeals process. Parents do not know how to access mediation, nor how to file a complaint.  24%  of the parents noted that information was not provided in their native language if they were non-English speaking, and that interpreters were not provided at Team meetings.

Children in State Custody. Foster parents reported that administrative procedures are insufficient to ensure continuity of services. Thus, children must wait unserved or remain “lost” as re-evaluations are conducted or red-tape is unraveled.

6. Do children receive services on their third birthday?
Parent inquiries indicate that implementation of Department of Public Health (DPH) and DOE policies vary. Despite interagency agreements, services often are not in place when the child turns three. Parents reported having little input and that schools offer a standard package regardless of needs. 

To view the full survey report to OSEP, with parents’ responses and Executive Summary, click here.
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PAL Statewide News
Happy Trails to June
June Gross, founding director of PAL (Parent Professional Advocacy League), has announced that she will be leaving her position to return to her career as a writer.  Over the past seven years, June’s commitment, expert direction, and tireless efforts have helped build PAL to a position of prominence as the voice for families of children and adolescents with mental health needs in Massachusetts. 

“It’s a good time,” said June. “The PAL Advisory Board recently concluded a strategic planning process and we have a new committee structure that’s bringing in valuable new energy, ideas, and people, and also giving more structure to the work of the dynamic advocates already part of PAL.”

Donna Welles, PAL’s Associate Director, is assuming the position of PAL Director effective Jan. 4, 1999.  Donna directed the Parent Information Network in Southeastern Massachusetts before coming to the PAL coordinating office almost two years ago.

“Of all the start-ups I’ve been part of, none has been so important to me as PAL,” said June.  “The inspiration I have drawn from families and their stories has carried and sustained me so many times.  I feel so lucky to have been part of such an important cause, and such an important family.”

PAL staff train and support Parent Partners around the state to support families in treatment planning and implementation.  During the past year, PAL has played a key role in educating mental health professionals about parenting children with mental health needs, including families’ difficulties with managed care, the schools, and the stigma and isolation that they and their children face.  PAL has also played an important role in the structuring and development of the new Collaborative Assessment Program, a joint intake project of the Department of Social Services and the Department of Mental Health.

PAL is the Mass. State Chapter of the Federation of Families for Children’s Mental Health and is a project of the Federation for Children with Special Needs, funded by DMH.

Everyone at the Federation and the extended PAL family wish June the very best in her new endeavors.  We’ll miss you!

PAL Metro Boston Families & Professionals
“Share Strengths” at ’98 Family Conference
Families from Mattapan, Dorchester, Roxbury, Jamaica Plain, Hyde Park, Quincy, Cambridge, Somerville, Everett, and Revere attended PAL Metro Boston’s first annual Family Conference.  The Conference, “S.O.S.” (Sharing Our Strengths), was held on Saturday, November 7, at the New Covenant Christian Center in Mattapan. 

To help eliminate barriers to attendance, PAL Metro Boston provided childcare for 11 children ages 5-12 and an interpreter to translate for Latino families.  Breakfast and lunch were served, and snacks were available for the
children throughout the day.

Dr. Gloria Johnson-Powell, eminent child psychiatrist, researcher, and author, began the conference by sharing her memories of growing up in Roxbury, the daughter of a father with mental illness and a mother who had to support the family with the help of public aid.  Her inspirational story helped set the tone for the day.

Heidi Loock-Haughey, a lawyer and special
education advocate, then gave a presentation on the Individualized Education Plan (IEP).  She emphasized ways to use IEPs to create more successful academic experiences for students, and stressed the importance of being strong advocates for our children.

The most popular event of the day proved to be a Family Panel. The panelists, two children, ages 8 and 15, and their mothers, shared with participants the impact both of raising and of being a child with special needs. The panelists’ experiences and the audience participation confirmed again the powerful impact on families of knowing they are not alone in their struggles and affirmed the benefits of “Sharing Our Strengths.”

At the end of the Conference, families were invited to stop by the resource tables to ask experts specific questions about parenting challenges, special education/school issues, medication, and future family support programs.  In addition to seeking expert advice, families also had an opportunity to continue networking.

Given the success of this year’s Conference and the positive feedback received through participants’ evaluations, PAL is excited about the possibilities for the second annual PAL Metro Boston Family Conference.  In the meantime, families are encouraged to contact PAL with suggestions and ideas, either for next year’s conference or for any of PAL’s existing support groups.

Thank you to everyone who contributed to the success of the Conference!
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Health News from Family Voices at the Federation 

Department of Public Health Maternal and Child Health Block Grant
Each year, Massachusetts submits a Title V (of the Social Security Acts) Block Grant Application to the federal government’s Maternal and Child Health Bureau (MCHB).  Money from this Block Grant is used for the state Department of Public Health’s (DPH) Maternal and Child Health programs that benefit women, infants, children, and adolescents in all areas of health, from prevention to primary care and special health care issues.

States file their applications each summer. Then, the MCHB’s regional offices review the applications to see that all requirements are met and that they are consistent with the goals of the MCHB.  Each state must devote 30% of its MCHB funding to benefit children with special health care needs.  DPH’s Division of Children with Special Health Care Needs has provided funding for parent-to-parent support through the Family TIES Project.

States are required by federal law to include families in the process of developing their Block Grant Applications.  To prepare parents to participate in developing their state’s Block Grant Application and to serve as parent reviewers of state applications, Family Voices, along with officials from MCHB, sponsored training opportunities for parents in New England, Chicago, and San Francisco. 

For information on how Massachusetts will develop next year’s application, please contact Family Voices at the Federation office at (617) 482-2915.

Your Voice Counts!
The Family Partners project is collecting information from families participating in both managed care and traditional health care plans on the quality of service delivery for children with special health care needs.  As of November 20, about 100 Massachusetts families have completed and returned surveys, which will be part of 2,700 responses from families in 20 states.  The Project is now summarizing all the information from families about their real-life experiences with their children’s health care.  The Project expects to have completed this analysis by the Spring, and is eager to share this incredible information with families as it becomes available. 

If you have a questionnaire and are wondering if you still can send it in—you can!  If you don’t have a return envelope or need another survey, please call (800) 784-6938.  Thanks again to all the Massachusetts families who filled out and returned the survey!

About CHIP
Massachusetts continues to enroll children in the state’s Children’s Health Insurance Program, a new national program to provide insurance coverage for uninsured children. To make certain that families have every opportunity to know about the program and enroll their children, Massachusetts has awarded mini-grant funds to more than fifty agencies and organizations.  The purpose of the grant funds is to increase and enhance outreach to geographic and linguistically diverse communities.  The Health Care for All website (hcfa.org) has statistics on the number of children currently enrolled in communities across the state.

At this time the state is evaluating the cost-effectiveness of directly paying for family health insurance premiums rather than just covering the children in the CHIP plan.  Such a practice would extend coverage to adults.

To find out if you are income-eligible for the CHIP program, please call (800) 909-2677.
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Published annually by the Federation, the Summer Camp Directory booklet provides information on 39 day and residential summer camps, plus a listing of local community resources. It provides guidelines for selecting a camp, and suggestions for including children with disabilities in regular camps.  Available February 1, 1999. Reserve your copy now! 
44 pages.  $6.25

Did You Know…? 
• The Federation employs a staff of 44 people.

• 25 projects/contracts are currently housed at the Federation.

• Federation staff work out of  9 locations across the state.

• 9 people serve on the Board of Directors for the Federation.

• The Federation webpage (www.fcsn.org) welcomed 12,000 visitors in November 1998.

• Those 12,000 visits to the Federation website came from a total of 50 countries.
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Participação Forte de Pais na Fiscalização Federal

Recentemente o Departamento de Educação no EUA, Repartição de Educação Especial (OSEP) conduziu reuniões públicas em quatro locais em Massachusetts sobre como a educação especial é fornecida.  Baseado nas preocupações levantadas nestas reuniões, fiscais de OSEP voltarão em fevereiro para focalizar em vários distritos escolares específicas e o cumprimento do Acto do Indivídios com Dificuldades de Educação (IDEA), a lei Federal sobre educação especial.

A Federação, junto com  o Mass. Advocacy Center (Centro de Advocacia de MA.) e o Disability Law Center (Centro de Lei de Deficiéntes) desinvolveu um questionário (em inglês, espanhol, e português) para ver que as familías em Massachusetts pensam sobre a educação especial  que as suas crianças recebem.  Mais de 400 famílias de 82 comunidades responderam e as respostas foram contadas, analizadas e distribuidas nas reunirões de OSEP.

As respostas do questionários revelaram os seguintes areas de preocupação:
• não cumprimento com os IEPs (PEI),
• decisões feitos nas reuniões da junta,
• ambiente menos restritivo (LRE) e inclusão
• acesso ao currículo geral,
• serviços para famílias que falam uma outra lingua sem ser inglês em casa,
• continuidade de educação para crianças em custódia do estado,
• Planos e serviços de transição para educação secundário, e
• efetividade do Departamento de Educação Especial (DOE), Complaint Resolution System (sistema de resolução de reclames)

No relatório ao OSEP, a Federação derivou informação do questionário, uma revisão dos últimos 14 meses das chamadas recebidas em nossos escritórios e os resultados do MCAS (teste na escola).  O seguinte resumo do relatório foi organizado para responder as perguntas de OSEP.

1. Educação especial e serviços relacionados promovem uma educação de alta qualidade?
Somente 58% dos pais responderam que a sua criança receba todos os serviços indicados necessários pelo TEAM (junta).  Os pais escreveram que as professores não sabiam que as crianças tinham IEPs (PEI), que IEPs foram ignorados, e que servicios relacionadas foram providenciadas por pessoas sem qualificações ou ignorados totalmente.

2. Estudantes tem acesso ao currículo geral num ambiente menos restritivo?
Somente 51% dos pais sentiram que o TEAM considerou todos os serviços de apoio e acomodações necessarios para sua criança participar nas aulas de educação regular e atividades não acadêmicas com crianças sem impedimentos.  Algumas crianças têm acesso ao ginásio, as aulas de arte, ou lanche com colegas de educação regular mas não tem acesso ao currículo academico regular.  Outro meio de medir o acesso dos alunos ao currículo geral é o desempenho mostrado no teste estadual,  MCAS, (sistema assessorial compreensiva de Massachusetts).  DOE anunciou que 97% dos alunos com impedimentos não passaram nos testes ou tiraram notas baixas que necessitam melhorar, dobro o número de alunos sem impedimentos.

3. Estudantes com 14 anos ou mais estão sendo preparados para a transição para trabalho, subsistência independente, ou serviços educacionais adicionais?
71% dos pais com crianças com mais de 14 anos avisaram que não receberam ou não sabiam se receberam uma declaração de serviços de transição no IEP da sua criança.

4. Os pais estão envolvidos na educação da sua criança?
Quase 60% dos pais disseram que não receberam ou não sabiam se receberam uma declaração de serviços de transição no IEP da sua criança.  23% dos pais não fizeram parte das decisões finais do TEAM — funcionários da escola ausentes do reunião tomaram decisões.

5. Existem barreiras administrativas para conseguir serviços apropriados? Sim.

Verbas. Algumas sistemas escolares simplesmente pararam de dar educação especial devido a falta de dinheiro suficiente.  Outros pais escreveram que as sistemas escolares cessaram programas de educação especial para grupos de crianças, e.g. estudantes com L.D. (deficiência de aprender), ou estudantes na última ou penúltima an na escola superior (high school).

Sistema de Resolução de Reclames/Processos Legais.  Distritos locais fornecem informação insuficiente sobre a sistema de reclames e o processo de apelação no DOE. Os pais não sabem como ter acesso à mediação, tambêm não sabem como iniciar uma reclamação.  24% dos pais anotaram que informação não foi dado na sua língua nativa, sem ser inglês, e que intérpretes não foram fornecidas para reuniões do TEAM (junta).

Crianças em Custódia do Estado.  Pais adotivos informaram que procedimentos administrativos são insuficiêntes para certificar continuidade de serviços.  Porêm, crianças ficam esperando para os serviços começarem ou ficam “perdidas” enquanto as reavaliações estão sendo feitas ou problemas burocráticas ocorrem.

6. As crianças recebem serviços quando fazem três anos?
As inquirições dos pais indicaram que as implementações de apólices do Departamento de Saúde Público (DPH) e DOE variam.  Apesar de acordos entre as agências, serviços freqüentamente não estão prontos quando uma criança faz três anos.  Pais informaram que tem pouco participação e que escolas ofereçam um pacote padrão de serviços apesar das necessidades.

O relatório completo do questionário para OSEP, com as respostas dos pais e resumo executivo, está disponivel no Internet no website - www.fcsn.org.
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Fuerte Participación de los Padres en el Seguimiento Federal
El Departamento de Educación de los Estados Unidos, la Oficina de Programas de Educación Especial (OSEP) tuvo recientemente reuniones en cuatro localidades a través de Massachusetts para recoger información acerca de como se provee la educación especial aquí. Basadas en las preocupaciones que se levantaron en estas reuniones, OSEP volverá en febrero para enfocarse en el cumplimiento de distritos escolares específicos con el Acta de Educación para Indivíduos con Discapacidades (IDEA), la ley federal de educación especial.

La Federación junto con el Centro de Abogaciá de Massachusetts y el Centro de Leyes y Discapacidades desarrollaron un cuestionario (en inglés, español y portugúes) para averiguar que piensan las familias en Massachusetts acerca de la educación especial que reciben sus niños. Más de 400 familias de 82 comunidades respondieron. Las respuestas fueron recopiladas, analizadas y distribuidas en las reuniones de OSEP.

Las respuestas del cuestionario revelaron los siguientes áreas de preocupación:

• el no cumplir con el IEP,
• Decisiones que se toman en la Reunión de Equipo,
• Ambiente menos restrictivo (LRE) e inclusión,
• Acceso al currículo general,
• Servicios para familias que hablan en la casa un idioma diferente al inglés,
• Continuidad en la educación para los niños que están a custodia del estado,
• Planes y servicios de transición para
educación secundaria, y
• Efectividad del Sistema de Resolución de Problemas del Departamento de Educación (DOE) estatal.

En el reporte a OSEP, la Federación obtuvo información del cuestionario, un análisis de las llamadas telefónicas de los 14 meses pasados, y los resultados del Sistema Comprensivo de Evaluación de Massachusetts (MCAS). El siguiente resumen del reporte está organizado según a las preguntas de OSEP.

1. ¿Promueven la educación especial y los servicios relacionados una educación de alta calidad?
Sólamente 58% de los padres respondieron que sus niños reciben todos los servicios necesarios que fueron recomendados por el Equipo.

2. ¿Tienen los estudiantes acceso al currículo general en el ambiente menos restrictnivo?
Sólamente 51% de los padres siente que el Equipo considera toda la extensión de servicios de apoyo y acomodaciones necesarias para que sus niños participen en las clases de educación regular y actividades no académicas con niños sin descapacidades. Algunos niños tienen acceso a educación regular a través de classes del gimnasio, arte o almuerzo pero todavía no tienen acceso al currículo académico general. Otra forma de medir el acceso de los estudiantes al currículo general es los resultados de MCAS. DOE reportó que 97% de los estudiantes con discapacidades fallaron o necesitaron mejorar su calificación, una cantidad doble que la de los estudiantes sin discapacidades.

3. ¿Están los estudiantes de 14 años en adelante empezando su preparación para una transición con éxito en el trabajo, vida independiente, o servicios de educación adicionales?
71% de los padres con niños mayores de 14 años reportaron que ellos no sabían o no recibieron un informe de servicios de transición en el IEP de sus niños.

4. ¿Están  los padres envueltos en la educación de sus niños?
Casi 60% de los padres dijeron que no hubieron un aporte verdadero o no sabían si ellos aportaron al IEP. La mayoría no estaban claros acerca de los servicios que sus niños deberían recibir. 23% de los padres no fueron tomados en cuenta por el Equipo cuando se realizó la decisión final — el personal de la escuela, que no estuvo en la reunión, tomó las decisiones.

5. ¿Existe alguna barrera u obstáculo administrativo a obtener los servicios apropiados?

Fondos: Algunos sistemas escolares han descontinuado los servicios de educación especial a causa de que no hay fondos adecuados. Otros padres escribieron que algunos sistemas escolares han suspendido la educación especial a grupos de niños. Ej: Estudiantes con discapacidades de aprendizaje o estudiantes en los grados 11 y 12.

Resolución de Problemas/Sistema de Procesos Legales: Los distritos locales no proveen información suficiente acerca del sistema de quejas y proceso de apelación. Los padres no saben como obtener acceso a la mediación o como iniciar una queja. 24% de los padres notaron que información no fue provista en su idioma natal, si ellos no hablaban inglés. y que intérpretes no fueron provistos en la Reunión de Equipo.

Niños en custodia del estado: Padres adoptivos reportaron que los procesos administrativos son insuficientes para asegurar la continuidad de servicios. Sin embargo los niños tienen que esperar sin servicios o permanecer “perdidos” mientras se conducen las re-evaluaciones. 

6. ¿Están los niños recibiendo servicios cuando cumplentres años?
Los padres indican que el cumplimiento de polizas de Departamento de Salud Pública (DPH) y DOE varian. A pesar de los acuerdos entre las agencias, a menudo los servicios no están disponibles cuando el niño cumple los tres años. Los padres reportaron que tenían poca aportación y que las escuelas ofrecen un programa establecido sin tener en cuenta a las necesidades.

El reporte completo del cuestionario a OSEP, con las respuestas de los padres y el resumen ejecutivo, está disponible en el website: www.fcsn.org.
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Parent Training and Information | Parents Engaged in Education Reform

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