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1135 Tremont Street, Suite 420 | Boston, MA 02120 fcsninfo@fcsn.org NewsLine Summer 2001, Volume 22, Number 3 (NewsLine is also available in PDF Format. You will need Adobe Acrobat Reader to view the file.) In This Issue
First Federation Conference of the Millennium On Saturday, March 17, the Federation for Children with Special Needs hosted its annual conference. A crowd of 600 parents, professionals, presenters and exhibitors gathered at the World Trade Center in Boston to demonstrate their commitment to students with special needs. Several state officials attended as well, including Debbie Klein-Walker, the Deputy Commissioner of the Massachusetts Department of Public Health, and Gerry Morrisey, Commisioner of the Department of Mental Retardation. The keynote speaker, Tom Hehir, special education teacher and visiting Professor of Education at Harvard University's Graduate School of Education, captivated the audience with his address, "Seizing the Opportunities under IDEA." The presentation was full of inspiration, information, and cheer, and the audience was impressed with Dr. Hehir's passion and enthusiasm.Ê One participant commented that, "He understands that children who are disabled are also able." Following the keynote, elementary school students from the A.L.L. School in Worcester, and secondary school students from the Cambridge School in Weston, performed a spirited play called, "The Funny Old Man and the Dumpling," using American Sign Language. The collaboration of the two schools was an inspiring example of communities working together to include all children and the energy and enthusiasm of the students set the tone for the day. The Federation was pleased to be able to offer 30 workshops, including information for parents of younger children, in either Spanish or Portuguese, plus simultaneous translations for workshops offered in English. This year's conference was a great success and helped confirm our important role in helping families of children with special needs maximize their children's futures! The conference was a wonderful collaboration by Family TIES (Together In Enhancing Support) and PAL (Parent Advocacy League), who are part of the Federation, as well as Massachusetts' Families Organizing for Change. We extend our thanks to Polly Sherman, the chair of the conference planning committee, the committee members, the volunteers, exhibitors, and the presenters, and of course, the many family members who took the time to attend. We look forward to seeing you all again next year! Laramee et al. versus City of
Worcester
In October 1994, Halina Suitum was removed from her classroom after an instructional assistant produced a diary describing the physical and emotional abuse to which she subjected her students. Ms. Suitum had been a teacher for several years in the Follow Me Program of the Worcester public schools, teaching a class of children with significant special needs. The Department of Social Services, and criminal investigation that ensued, revealed that Ms. Suitum had, for years, abused the pre-adolescents in her care by: hitting the children to the point of fracturing one girl's wrist; spanking the students and striking them with rulers and hairbrushes; brushing the children's teeth so hard their gums bled; swearing at the children; belittling them; and, teaching one boy from Puerto Rico to recite a perverse "pledge of allegiance" of "God Bless America for food stamps." Perhaps even more disturbing than the actions of Halina Suitum was the discovery that aides and a teacher had reported on numerous occasions, and as early as three years prior to her removal from the classroom, that they had witnessed Ms. Suitum hitting students. These school personnel testified that they had made these reports to the principal and head teacher, and there was evidence that those higher up in the school administration were aware of the allegations against Ms. Suitum. Despite these reports, Ms. Suitum was never removed from the classroom, a 51A was never filed with the Department of Social Services, and the parents of the children were never informed about the accusations. The damage done to the children from the years of witnessing and experiencing this abuse was extensive. Developmentally, they regressed or progressed very slowly during the years in Suitum's classroom; profound behavior problems surfaced and intensified in the children. The effects of the trauma were still being experienced by the children years after Ms. Suitum was sent to prison. The parents also suffered tremendously after realizing not only that their children had been continually abused by the trusted teacher into whose care they had delivered their children for years, but that others had known of the abuse and failed to stop it. On behalf of three students and their families, my colleagues and I filed a civil rights suit against the city of Worcester, the Worcester Schools and various school personnel. After years of depositions, expert examinations, exchanging documents and other pretrial matters, the case went to trial in federal court in Worcester in March 2000. After two weeks of trial, the city agreed to pay the families $1.5 million in settlement of their claims. What is sad and tragic about the case is obviousÑ the damage done to the students and their families and the failure of some school personnel to properly respond to allegations of abuse against particularly vulnerable students. What is instructive about the case is that children with special needs should not be, as they were in the Follow Me Program, isolated in a classroom away from the watchful eye of other teachers and school administrators. All school personnel need to be educated and reinforced about their obligation to report and pursue allegations of child abuse, and parents must be made aware of any such allegations. What is uplifting about the case is the ability of the legal system to bring compensation to victims as well as impetus for reform. The commitment of some school committee members and school administrators to seek to implement institutional changes to ensure that such tragedies do not reoccur; the courage of some school personnel to come forward to try to stop the abuse; and the strength, grace, courage, love and commitment of the Rinaldi, Laramee and Baez families, for whom it was my great honor to represent. Dan Heffernan is a partner in the law firm of Weisman & Associates. He is also the parent of a child with special needs and President of the Federation Board of Directors. Legislative & Policy Update:
One year ago, Massachusetts' lawmakers voted to make dramatic changes to Chapter 766, our state's special education law. This vote resulted in a major overhaul of the statute that protects the rights of students with disabilities. These changes affect virtually every step of the special education process, including eligibility, timelines, services, and student placement. One of the most controversial changes was the repeal of the "maximum feasible benefit" (MFB) service standard. Despite the protests of thousands of parents, state legislators voted to adopt the less protective federal service standard, "free appropriate public education" or FAPE. The new law allows school districts to implement the federal FAPE standard beginning in January 2002. Parents, advocates, and educators remain fearful that repeal of MFB will harm thousands of children with disabilities for the reasons summarized below:
If passed, these bills, filed in both the House (H.B.) and Senate (S.B.) would require the Commonwealth to:
Determining Eligibility for Special Education Services The Massachusetts Department of Education (DOE) has created a new technical assistance document about special education eligibility entitled, "Is Special Education the Right Service?" Although still in draft form, the document has been posted on the DOE web site (www.doe.mass.edu/sped) and is also available on the Federation's web site at www.fcsn.org. Special education directors throughout the state have received training about eligibility for special education services. The DOE expects that this document, coupled with the state requirements and regulations, will provide guidance on "how to ensure a responsive general education environment and guidelines to assist practitioners and parents in identifying students with disabilities in the following ways
From the Executive Director: The Problem of Graduation "I don't know what to do!" These words were spoken by a parent who called the Federation for help in understanding the implications of the new graduation requirement in Massachusetts; beginning with the class of 2003, every student must pass the MCAS (Massachusetts Comprehensive Assessment System) test in order to receive a standard high school diploma. In this particular situation, the student has been receiving special education services his entire school career. The school told this parent that her son could graduate this year and receive a "regular diploma" since the MCAS requirement is not yet fully in place, or he can remain in school and face the MCAS standard. The federal law, IDEA-97, states that students with disabilities are entitled to a free appropriate public education (FAPE) until they graduate with a standard diploma or until they turn 22 years old. Historically, many school districts have allowed (and even encouraged) students to "graduate" with their class upon the completion of their IEP (Individual Educational Program) goals. However, if they "graduate" before turning 22, these students are no longer eligible to receive special education services. Once implemented, the new MCAS requirement means that a student must be able to demonstrate basic competency requirements before educational services can be terminated. This means all students who receive special education services must demonstrate their ability to read, write and do basic math in order to graduate. Until this occurs, the student must, under federal law, continue to receive educational services until the age of 22. As a parent, I want my child to "graduate" with his/her class. The social and emotional aspect of his/her participation in the graduation experience is important to my family and me. Following graduation, it is equally important that there are services and supports in place that will provide for continuing education and employment supports. The development of a transition plan, again specified by federal law, is the place to detail these post-graduation services. However, the agencies that serve adults cannot guarantee that they will be able to provide these services. Until age 22 it remains the responsibility of the educational system. The parent told me her son loves going to school and is doing well. He is reading at a 4th grade level, which far exceeds her wildest dreams for him. His math skills are elementary but he is learning to use money. He is 19. The school department feels it is time for him to graduate. She is his guardian and by law, she must consent. What is this mother to do? There is no easy answer to her problem. My suggestion was for her to request that her son participate in the graduation ceremony with his class, accept a "certificate of completion" (which is not a diploma), and work with the school and adult service agencies to build a transition plan for the next 3 years. Building a transition plan will require hard work, cooperation, and creativity on the part of the school, the parent, the student, and the human service agencies. But at least this student will be able to "graduate" with his classmates, knowing there is a team of people working together on his behalf to provide the supports and services he will need for the next three years. If you have had an experience with a graduation decision, we would be interested in knowing about it. Please contact me at rrobison@fcsn.org or call 617-236-7210. Ask Eileen: Empowerment Through Information This column highlights questions that Eileen and the other Federation Information Specialists are most frequently asked. Dear Eileen, I know the law states that my child is entitled to have access to the general curriculum and I would like to make this happen in a meaningful way, but I don't know where to begin. Can you help? At the Federation, we receive many calls from parents who are concerned with how their child with a disability can meaningfully participate in learning what their peers are learning in the classroom. A number of federal and state laws such as IDEA'97, Section 504 of the Rehabilitation Act, and Chapter 766, the Massachusetts special education law, assure that children with disabilities have opportunities to participate in and benefit from the general curriculum. These laws mandate that schools provide accommodations, modifications, supports and services that children with disabilities need in order to be involved in and make progress in the general curriculum, and to do this in the least restrictive environment. However, for many parents, making this happen for their child is a struggle, and it is easy to become overwhelmed. This task becomes more manageable when your child's IEP team works on it together. As part of your preparation for Team meetings, ask about the curriculum for the upcoming year. Your district should have a well-defined curriculum for each grade that is aligned to the Massachusetts Curriculum Frameworks (www.doe.mass.edu/frameworks/). Review the areas where your child has experienced successes and struggles during the previous year. Since all students differ in the way they learn most effectively and in how they demonstrate their knowledge, it is important to let the Team know your child's strengths as well as his/her areas of need. The regular education teacher will play an integral role on the team, providing hands-on knowledge of the expectations for all students. The regular education teacher should describe these expectations to the Team so that the other members can use their knowledge and expertise to adapt the upcoming activities to the student's unique needs. The Team will determine your child's present level of educational performance in each curriculum area based on evaluation data, results from district and statewide testing, progress toward meeting current goals, information from you and observations from teachers and service providers. Other areas of educational need, such as occupational therapy, physical therapy, social/emotional needs, or functional skills will also be taken into account. There is no one set of accommodations, modifications, services or supports that is appropriate for all children because each child is unique and will access the general curriculum in a different way. For some students, access to standard textbooks on audiotape might be helpful, for others working on projects with other classmates or taking quizzes or tests orally may give them greater access to the curriculum. Some students may need pre-teaching in small groups or co-teaching, where a general education teacher and a special education teacher work as a team in the classroom. For many students, assistive technology devices and services such as alpha smarts, voice-recognition software, and even calculators can help in increasing access. The trick is to build on the student's strengths to help them overcome areas of weakness. The Team will develop annual measurable goals and objectives so that you and the school will know whether or not your child is making meaningful progress. These goals should address your child's progress in the general curriculum as well as in other areas of need. These goals should be meaningful and understandable for every one on the Team. The goals should be reviewed throughout the year and this information should be shared with you through progress reports. Regular contact with both special education and regular education staff throughout the year will be necessary to keep things running smoothly. Eileen Souza has decided to retire as of August 2001. Eileen has been an information specialist at the Federation for 23 years. We miss you already! Making SSI Work: Tips for SSI Recipients Who Want to Work For many people who receive Supplemental Security Income (SSI), the fear of losing the accompanying health insuranceÑMedicaidÑmay keep them from getting a job. Medical insurance often plays a critical role in the lives of people with disabilities due to complex medical needs. This issue will review one of the SSI work incentives referred to as status 1619(b): Continued Medicaid Coverage, as well as other health insurance options for people who work. Once determined eligible for SSI, one also receives benefits under the Medicaid program. This happens automatically, and no additional application needs to be filled out. In Massachusetts, the Medicaid program is referred to as MassHealth. Will I automatically lose my MassHealth
when I begin to work?
Do I have to apply for Continued
Medicaid Coverage?
Will there be a point when my
Medicaid will end?
What if I can't afford health
insurance but I am earning too much to receive Medicaid?
This is a product of Opening Doors,
a collaborative project of the Institute for Community Inclusion, Federation
for Children with Special Needs, and the Disability Law Center on increasing
utilization of SSI work incentives. For more information about MassHealth,
call:
Suggested topics for future newsletters
are welcomed. If you have questions related to SSI and SSI work incentives,
contact:
Learning About Service Coordination:
The Massachusetts Early Intervention System has been chosen to participate in a national project about service coordination. Service coordination is an essential component of early intervention services; it constitutes the activities that assist and enable an eligible child (and the child's family) to receive the rights, procedural safeguards and services that families are entitled to receive through each state's early intervention system. These services may include helping families obtain services and assistance from other agencies in addition to the early intervention services families receive from their local program. A service coordinator, who is assigned to the family, facilitates these activities. This national project was created
in response to a need for improvement in how services are coordinated for
children and families in early intervention. The Research and Training
Center on Service Coordination, housed at the University of Connecticut,
is conducting this five-year study. Other partners include the University
of North Carolina at Chapel Hill, Indiana University, and the Federation
for Children with Special Needs. The goals include:
During year one, the Center focused on determining the outcomes of effective service coordination. They gathered information in a variety of ways. Part C (early intervention) coordinators and families who receive early intervention services in all 50 states were surveyed. More information was collected during focus groups held in the four partner states. Focus group participants included early intervention providers, program directors and families as well as childcare providers and physicians. In Massachusetts, eleven focus groups were held throughout the state, with participants from urban, suburban, and rural communities. After all the information was compiled, the Center created a list of the 10 outcomes that were most valued by all the participants. This list is the basis for the second year's series of focus groups. In Massachusetts, family members, early intervention program directors, and other early intervention providers are being asked to participate in another round of focus groups to identify the practices we need to implement in order to reach the 10 outcomes that were identified in year one. In the remaining three years, this information will be used to implement change in current practices regarding service coordination. It is exciting for Massachusetts to be participating in this study. Our state has the opportunity to contribute to this current and very timely research on an essential component of early intervention. Participants have the opportunity to speak out about their own experiences, hear from others in the same role, and eventually work together to improve service coordination in Massachusetts. Ultimately, this will mean a system that continues to grow in its ability to successfully provide meaningful, coordinated, and family-centered services and supports for children and families being served by the early intervention system nationwide. For more information about this project or to participate in a focus group, please call Janet Price at the Federation at 1-800-331-0688, ext. 157 or e-mail her at jprice@fcsn.org. Update on Interviews with Managed Care Plans in Massachusetts Teams of family leaders have completed interviews with seven managed health care plans in Massachusetts; three more are planned. Similar interviews are underway in 10 other states as part of this national project, funded by the Packard Foundation, with the assistance of New England Serve and the Department of Public Health in Massachusetts. We extend special thanks to the excellent teams of parents in Massachusetts who conducted these interviews. Additionally, we thank the staffs of the managed care organizations that generously donated their time to participate in these important discussions about the issues faced by children with special health care needs within the managed health care system. The interviews have sparked concrete ideas of how families might learn more about health plans and how plans might learn more about the needs and concerns of families of children with special health care needs. The information from the interviews, when completed, will be summarized and shared with participants and interested others as a tool for further discussions. One of the goals of the project is to establish relationships between family groups and health insurers to ensure that children with special health care needs are well served by their managed care plans. Our next step is the Massachusetts Forum for Children with Special Needs in Managed Care, to be held on Friday, October 26, 2001. Family leaders, staff of managed care plans, health providers, and state and local program and policy staff will be invited to this day of discussion and planning around the issues of children with special health needs in managed care in Massachusetts. SAVE THE DATE!
New Website for Families! www.brightfuturesforfamilies.org Visit the site to learn about the Bright Futures project and how you and health care providers can be partners in caring for your child. Share your ideas or get suggestions from others. Visit the Bright Futures Family Talkcard interactive web pages to exchange ideas and tips about specific parenting issues. Download Your Own Copy of:
Introducing massfamilyvoices.org Introducing www.massfamilyvoices.org, your online connection to Massachusetts Family Voices, the state chapter for Family Voices, a national grassroots organization speaking out for families with children with special health care needs. Visit the website and find: Insurance Corner and other programs of interest:
If you want to join, have information to share or comments about the web site, please contact: Polly Sherman at polly.sherman@state.ma.us or 1-508-947-1231; Peggy Curran at pcurran@fcsn.org or 1-800-331-0688, ext. 155 In collaboration with the Federation for Children with Special Needs Affordable Drug Coverage for Massachusetts Elders and People with Qualified Disabilities At a time when the rising cost of medication is on everyone's mind, Massachusetts has created a new option for affordable prescription drug coverage. On April 1, 2001, the Prescription Advantage plan went into effect. It provides elderly citizens and persons with qualified disabilities affordable, comprehensive prescription drug coverage. The Massachusetts Executive Office of Elder Affairs administers this plan, which replaces the Commonwealth's PHARMACY Program and PHARMACY Program Plus. Prescription Advantage covers the same individuals who had been enrolled in those plans, but provides a higher level of coverage to more people. Prescription Advantage is open to most Massachusetts elders. Basically, any elder who is a resident of Massachusetts and is not a member of any MassHealth program (Massachusetts' Medicaid programs), is eligible for Prescription Advantage. Enrollees must be: 1. 65 years old or older; or
Prescription Advantage pays for most prescription drugs, including insulin and disposable insulin syringes with needles. Monthly premiums and annual deductibles are determined on a sliding scale based on household income. In cases of very low income, Massachusetts will pay the premiums and deductibles, with the insured only paying the prescription co-payment. Higher income enrollees pay a maximum monthly premium of $82 and a maximum annual deductible of $500. Unlike most prescription drug plans, Prescription Advantage has no limit on benefits. No enrollee will pay more than $2,000 or 10% of their income (whichever is less) in annual out-of-pocket expenses. At a time when elders and persons with qualified disabilities are worried about their quality of life and how prescription drug costs will affect them, Prescription Advantage is worth investigating. First-of-its-kind in the nation, Prescription Advantage will enable elders and persons with qualified disabilities to have the prescription drug coverage they need at a reasonable cost. Enrollment Forms for Prescription Advantage are available by calling toll-free, 1-800-AGE-INFO (1-800-243-4636), by logging onto www.800AgeInfo.com, or toll-free by teletypewriter (TTY) at 1-877-610-0241. Forms can also be obtained by mail at: Prescription Advantage, PO Box 15153, Worcester, MA 01615-0153. Do you or anyone you know have a child or adolescent whose life is affected by an emotional, behavioral, or mental health disorder? If so, you will want to participate in a series of workshops called Visions for Tomorrow. In March 2000, the Parent/Professional Advocacy League (PAL), in collaboration with NAMI-MASS, sponsored an intensive training for 30 people who will soon be teaching Visions for Tomorrow. Visions for Tomorrow is an educational course for parents and other caregivers of children who have been diagnosed with brain disorders as well as those who exhibit behavior that strongly suggests such a diagnosis. The Visions curriculum balances educational materials and skills training with self-care, emotional support and empowerment. ADD/ADHD, PDD/Autism, Tourette Syndrome, Conduct Disorder, Bipolar Disorder, Depression, Eating Disorders, Obsessive-Compulsive Disorder, Schizophrenia, Panic Disorder, and Anxiety Disorders are a few of the diagnoses addressed in the curriculum. There is no charge for the course. A binder with materials will be given to each person who attends the classes. The course has been designed and written by experienced caregivers, family members, and professionals in Texas and is being offered for the first time in Massachusetts. Visions classes will be offered at many locations throughout the state. For more information, or to register, call Anne Khudari at 800-370-9085 or Lisa Lambert at 800-537-0046. (PAL is the Massachusetts Chapter of the Federation of Families for Children's Mental Health and works in collaboration with the Federation for Children with Special Needs).
Web page by John Sullivan |