The Federation is proud to feature Gunnar Dybwad, a "Great Grandfather" of the disability rights movement, in our Founding Stories series. At the Federation's 25th Anniversary Gala, Gunnar tapped his reservoir of 60 years of vigorous advocacy to illuminate critical junctures and stunning successes along the way. Gunnar has been part of every significant legal, ethical, and moral victory with and for people with disabilities during the last century. He and his wife Rosemary sparked an international movement of parent empowerment decades before such ideas were even dreamed. They nurtured parent groups struggling to establish themselves everywhere. Gunnar and Rosemary's profound legacy and belief in families and individuals, no matter how disabled, is the bedrock upon which the Federation is built.

In the speech excerpted below, Gunnar referred to the decade of the 1970's as "the most exciting and most rewarding for me as a committed person in this field." He concluded his speech with these words which still ring true for him today:

"But as always, I am an optimist. I rejoice how far we have been allowed to travel, and I have no doubt that the journey will go on."

We begin the following excepts from Gunnar's essay "From Feeblemindedness to Self-Advocacy: A Half Century of Growth and Self-Fulfillment" with 1975, the year the Federation opened its doors and one year after the passage of Chapter 766:

In 1975, Congress passed PL 94-142, The Education for All Handicapped Children Act [now known as IDEA, the Individuals with Disabilities Education Act], a mighty step forward toward school integration even though in actual practice the "all" carried with it a few grains of salt. Still, all in all, the legislative process was impressive, but it was matched by a new phenomenon in the human services field--a steadily growing number of judicial actions. . . The first case was filed by the Pennsylvania Association for Retarded Children against Pennsylvania state agencies. After listening to one day of testimony by PARC's expert witnesses, the three-judge Federal District Court suggested that since the State had not contested plaintiffs' claims that no child should be deemed ineducable and thus excluded from schooling, the parties should work out a consent agreement. This was done and in due time, the Court approved it.

Shortly after the PARC case had been started, a class action suit Mills v. Board of Education was filed in Washington, DC, and in that case, the plaintiffs represented not just children with mental retardation but with a cross-section of disabilities. This case ended in a judgment by the U.S. District Court which makes for very interesting reading. In response to the district's claim that they needed additional funds before they could admit children excluded on account of disability. Judge Waddy stated:

"The District of Columbia's interest in educating the excluded children clearly must outweigh its interest in preserving its financial resources. If sufficient funds are not available to finance all of the services and programs that are needed and desirable in the system, then the available funds must be expended equitably in such manner that no child is entirely excluded from a publicly supported education consistent with his needs and ability to benefit therefrom. The inadequacies of the District of Columbia Public School system whether occasioned by insufficient funding or administrative inefficiency, certainty cannot be permitted to bear more heavily on the 'exceptional' or handicapped child than on the normal child." Mills v. Board of Education (1972).

[In a later speech. "Beginnings and Endings: The Quality of Life for Young and Old (1988), Gunnar expressed the following "lasting verities," truths which have much relevance for us today.]

I continue to be an optimist. We are making progress, we are gaining ground, and I still believe in some lasting verities. Some of you have heard them before, but they bear repeating:

In dealing with the problem of human growth and development, one should never say "never"--there is always change, the dynamics of which so far have not become clear to scientific exploration. No one can predict as a human being is born, where the limits of the person's growth and development will be. I reject and resent the arrogance of [those] who predetermine another human being's potential.

[Many] may continue trying to apply measurements to intellectual functioning, adaptive behavior, and emotional maturity, but the inherent dignity of a human being, no matter how severely disabled, cannot be quantitatively assessed . . .

In searching for solutions to human problems, I am more and more impressed with the overwhelming importance of one's personalized environment--for the child, the family; for the adult, in addition to his family, his own living space. Thus, home support looms ever larger on my list of priorities . . . . Much of my most significant learning in the field of disability I owe to parents of children with disabilties. 

More and more I am convinced that we must listen to a far greater degree to the individuals with disabilties. For a long time we thought those with more severe disabilities could not learn; now we know we did not yet know how to teach. Similarly, what we call the inability of persons with severe disabilties to communicate, may well be our ineptness in listening.

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Feds Cite Mass. DOE for Violations of Federal Law
The U. S. Department of Education's Office of Special Education Programs (OSEP) has released the report of findings from its review of Massachusetts' special education programs during the 1998-99 school year. OSEP was assessing Massachusetts' compliance with federal special education law, the Individuals with Disabilities Education Act (IDEA). OSEP reviewed special education services for students aged 3 through 21 in four key areas: parent involvement, the provision of a free appropriate public education in the least restrictive environment, transition for young adults, and the overall supervision of special education by the state. The results of the report were based on interviews with parents, agency administrators, local program and school administrators, service providers, teachers and service coordinators, reviews of children's records, and results of a survey the Federation distributed through NewsLine.

The single strength that OSEP identified in programs for school-age students was the Mass. Department of Education's (referred to as MASSDE in the report) partnership with the Federation. OSEP reported that Massachusetts needs improvement in four areas, and is in "longstanding, serious noncompliance" with the federal law in fourteen areas. The fourteen areas are:

· Denial of parents' right to participate in the decision-making process regarding their children.

· An IEP development process that results in delays in services and in children with disabilities not receiving services agreed to in IEP meetings.

· Psychological counseling not always provided as a part of a free appropriate public education when needed to enable children with disabilities to benefit from special education.

· Extended school year services not always available.

· Lack of opportunities for children in substantially separate educational environments to participate with nondisabled children in nonacademic and extracurricular activities.

· Lack of opportunity for children with disabilities to be involved and progress in the general curriculum.

· Lack of opportunity for children with disabilities to be involved in regular vocational education programs with appropriate supports as determined by an IEP team.

· Lack of outcome-oriented statements of transition services for students with disabilities who are 16 or older.

· Lack of a method for districts to ensure that outside agencies likely to be providing or paying for post-school activities are invited to the IEP meeting and of a method for obtaining their input if they do not attend.

· Students with disabilities not always invited to transition planning meetings.

· IEPs not always including a statement of transition service course of study for students with disabilities beginning at age 14.

· Lack of effective methods for identifying and correcting deficiencies in programs providing services to children with disabilities.

· No effective MASSDE system for resolving complaints regarding violations of Part B.

· No MASSDE ensurance that children with disabilities, receiving services through charter schools, receive a free appropriate public education. 

These violations prompted OSEP Director Kenneth Warlick to warn Commissioner of Education David Driscoll that "the state must take action" to see that this noncompliance is "effectively and promptly corrected." Driscoll wrote back to Warlick disputing the findings of this report.  

Suggestions for Improved Results for Children with Disabilities
OSEP provides the following suggestions for improved results for children with disabilities:

· A renewed emphasis on building partnerships and cooperation between parents and the educational community.

· Heightened efforts to facilitate the participation of non-English speaking parents in special education.

· Consideration for providing continuity in children's programs in districts that utilize "school choice."

· Addressing challenges to ensure that children with disabilities are given appropriate supports in the State-wide assessment. 

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Bicyclists Greeted as Celebrities!
Many of you have been following the journey of the Bryant family cyclists as they traverse the country from Washington state to the coast of Maine, raising funds for the Federation. We have posted regular updates of their trek on the Federation's website since May 17, Day l of Pedal Power 2000. Here is an excerpt from the June 24 entry:

Moorhead, MN to Hitterdal, MN, 35 miles in 3 hours. This was probably the best day of the trip so far with a very unexpected experience. It was a beautiful, sunny day as they bicycled from the prairie land of eastern North Dakota to the forests of Minnesota. After 28 miles of pedaling they hit a road closed sign. A road closed due to flooding opened the way to a great adventure for our Pedal to Empower team!

After crossing the flooded road and wading through knee-deep water, the cyclists found themselves in Hitterdal, population 200. Hearing music as they were eating their lunch, they discovered there was an antique car show. Invited to "come join rural America at its best," who could resist? Ralph and Dustin entered the pie-eating contest where their hands were tied behind their backs and a pie placed in front of them. Then they joined the slow bike riding contest, lawn mower obstacle race, and the bake and crafts sale. These activities gave the group a chance to meet almost everyone in town.

In the midst of their activities, they noticed two new model homes for sale next to the park. The Mayor explained that he had them built with State funds in an effort to attract new young families to their town. He gave them a tour and invited them to spend the night in one of the homes. Thanks to the Mayor they had hot showers, comfortable beds and plush carpets. Hitterdal has a predominately Norwegian population, and after treating the celebrities to lefse bread, the Mayor invited the guests to the pork feed at the community center. The after-dinner entertainment included a dance at the Senior Center with Accordion Dave playing.

One townsperson commented that they felt as if the town had their very own foreign exchange visitors. The next morning, after the pancake feed at the Community Center, the town of Hitterdal sent the pedalers off with many good wishes. Needless to say, the bikers left with very warm hearts, full stomachs, a good night's sleep, and lots of new friends.

Note: As we go to print, the bikers are arriving in Bar Harbor, ME, completing their journey.
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Highlights of Key Changes
After years of intense debate, lawmakers approved a major overhaul of Ch.766, our state special education law. Thousands of parents of children with special needs, advocates, educators, and other interested parties throughout Massachusetts worked tirelessly to try and keep our laws strong. Thus, it was extremely disappointing that in the end, the legislature and Governor decided to repeal the Massachusetts "maximum feasible benefit" (MFB) service standard.

It is important to note that the change from "maximum feasible benefit" to the federal standard of "free and appropriate public education" does not go into effect until January 1, 2002--therefore your school district can not propose any changes to your child's program based on repeal of MFB at this time. More importantly, parents and advocates have pledged to continue advocacy efforts in the legislature, at the State Department of Education, in local communities, and in the courts to ensure that children continue to receive essential services and equal opportunities.

As result of all the input and involvement from parents and others, lawmakers in the State House did vote to maintain other key protections and safeguards for children with special needs (despite Governor Celluci's veto of these provisions). It is very clear that input from parents made the difference when lawmakers voted to maintain these protections. These hard-won victories (which were achieved with the leadership and intense work of many supportive legislators) include:

Immediate Changes That Take Effect Now
1. All school districts must continue to maintain Parent Advisory Councils on special education (replacing a former regulation with statutory requirement)

2. Requires Board of Education to maintain former regulations regarding:

· 45-day timeline for development of IEPs and provision of services

· IEP Team's right to determine specific placement for a child with a disability

· Transportation protections and requirements

· Extended-day programs

· Parent consent and native language requirements

· Parents' right to observe programs

· Program and safety requirements for private special education schools

· Protections regarding special education facilities

· The definition of parent

· Content of evaluation requirements

· Waiver provisions

3. Requires Board of Education to adopt regulations on use of restraints.

4. Maintains eligibility for children with disabilities who require only related services, and requires Massachusetts Department of Education (DOE) to amend its regulations and notify districts accordingly

5. Requires DOE to develop a curriculum for annual parent/student rights workshop, in collaboration with various parent and advocacy organizations.

6. Requires school districts to hold annual parent/student rights workshops in cooperation with local PACs.

7. Creates and funds ($9 million) a state risk pool to allow school districts to share the risk of fluctuations in special education costs.

8. Requires school districts to implement curriculum accommodation plans to help ensure that all efforts have been made to meet students' needs in regular education

9. Schools must consult with parents about evaluators being used and the content of evaluations.

10. Requires school districts to report special education data, including information on the number of children in inclusive and segregated programs (reflecting old prototypes).

Changes Effective on January 1, 2001
1. Changes term throughout special education law from "child with special needs" to "child with a disability."

2. Changes definition of "school age child with a disability" by adopting federal definition of specific learning disability and emotional disability. Maintains eligibility for children with disabilities who only need related services.

3. Changes independent evaluation rights. Parents may share in costs of independent evaluations according to a sliding fee schedule. Families with incomes under 400% of poverty ($68,000 for a family of four) maintain current rights to free independent evaluations.

4. Strengthens pre-referral process, adding reading instruction and requiring principals to implement the district's curriculum accommodations plan in developing strategies for serving children with diverse learning styles

5. Requires the DOE to monitor compliance in school districts at least every three years and to provide training and technical assistance.

6. Allows a hearing officer to direct a state agency (department of social services, mental health, mental retardation, etc.) to provide services to a child, consistent with the regulations of that agency.

7. Provides that children may be placed in out-of-state placements only if no placement in the state can provide the services in the IEP consistent with requirements of federal and state law. (Students in programs as of June 1, 2000, will not be transferred based upon this section.)

Changes Effective January 1, 2002
1. The standard for special education programs and services changes from maximum feasible benefit to free and appropriate public education.

Changes effective July 1, 2002
1. Creates a new funding formula whereby the state will pay for 80% of all "in-district" special education costs that exceed three time the state average per-pupil foundation budget and 65% of all costs for all "out-of-district" special education costs that exceed four times the state average per-pupil foundation budget (exception for private schools enrolling hearing-impaired students). "In-district programs" includes separate schools operated by a school district and some collaborative programs.

2. Requires as part of certification that all educators and administrators have training in effective strategies for inclusion of children with disabilities

Changes effective July 1, 2004
Requires that as a condition of re-certification, all educators and administrators have training in inclusion strategies.

For more details about these and other changes to special education law, check the Federation website at www.fscn.org. If you are interested in receiving more information (materials will be available in September) or want to arrange a workshop regarding the changes to Ch.776, call Massachusetts Advocacy Center, Johanne Pino at 617-357-8431 x234. To schedula an IEP 2000 workshop, call the Fedration at 800-331-0688.
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From the Executive Director:
Historic Legislative Action Lowers Standard
The Massachusetts legislature has finally succeeded in undoing "Maximum Feasible Benefit." After many years of strong advocacy to keep these key words and their promise of a high quality-education as part of our state special education law, kids with disabilities and their parents have been dealt a huge blow. People are constantly asking, "What difference will this really mean?" One way to begin is to think about the law and the court decisions that originally gave these words their meaning. Our state law has said that we must educate students with disabilities to enable them to reach their maximum potential development. The federal law was interpreted by the courts to say that a school must assist a student with disabilities in making "some measureable progress." In other words, our long-standing reputation in Massachusetts as leaders in special education has been because we have insisted on doing our best--for even the most vulnerable students.

Maximum development is not only for students with disabilities. It is interesting to note that the preamble of the Massachusetts Education Reform Act (MERA) passed in 1993 calls for all students to be educated to reach their greatest potential. MERA has established high expectations and performance standards for all students. In fact, high quality education as described in MERA specifies that all children-and this law does specifically include students with disabilities--should learn and grow to fulfill their maximum potential!

One Example:
As a way to measure progress toward meeting those high expectations and standards, MERA and IDEA now insist that all students--those with disabilities included--participate in the statewide large-scale testing system known as MCAS. In 2001, all students will be required to pass the MCAS test in order to graduate. We know that 96% of the students with disabilities who took MCAS last year scored either in the failing or needs-improvement categories. MERA promises extra help and support to students in danger of failing to pass MCAS.

So, ironically, the repeal of the Maximum Feasible Benefit standard from our state special education law could mean the reduction of the level of services and supports provided to students. At the same time, the implementation of high-stakes testing means more students with disabilities need more supports and services to get over the graduation "bar." These two policies are on a collision course, and vulnerable students with disabilities are truly paying the price.*

No one knows for sure what the long-term impact of this change is going to mean for individual children. Will it save money? Most agree it will save little or none. Will it improve the quality of education? Lowering the standard of services and reducing educational supports in this era of high performance education is completely illogical and counterproductive.

High quality education as described in the education reform law is an obligation our whole society shares for all of our children, even the most vulnerable.

* Ironically, in spite of maximum feasible benefit's promise of a high quality education for children with disabilities in Massachusetts, a recent federal report highlights the tremendous gap between the 25-year old promise and the reality. The U.S. Department of Education's Office of Special Education Programs visited Massachusetts and found our state to be in non-compliance with the implementation and monitoring of the federal law. That means that Massachusetts has yet to rise even to the level of providing the lower federal standard. (See article on page 1).
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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,
I have requested an evaluation twice for two consecutive years and was told my son did not need special education. How do I find out if my child is eligible for special education?

I have had many requests lately regarding eligibility guidelines. Below is information about federal and state eligibility guidelines that should help you decide your next steps.

The Massachusetts Special Education Regulations effective September 2000 define an eligible student to mean:

"a person aged three through twenty-one (3-21) who has not attained a high school diploma or its equivalent, who has been determined by a Team to have a disability(ies), and as a consequence is unable to progress effectively in the general education program without specially designed instruction. An eligible student shall have the right to receive special education and any related services that are necessary for the student to benefit from special education. In determining eligibility, the school district must thoroughly evaluate and provide a narrative description of the student's educational and developmental potential." [Emphasis added.]

THE FEDERAL LAW (IDEA)
The Individuals with Disabilities Education Act (IDEA) gives eligible children with disabilities the right to receive special services and assistance in school. These services are known as special education and related services.

The first step is to find out if your child has a disability. To do this, ask the school to evaluate your child. Call or write the Director of Special Education or the principal of your child's school. Say that you think your child has a disability and needs special education help. Ask the school to evaluate your child as soon as possible.

The public school may also think your child needs special help, because he or she may have a disability. If so, then the school must evaluate your child at no cost to you.

However, the school does not have to evaluate your child just because you have asked. The school may not think your child has a disability or needs special education. In this case, the school may refuse to evaluate your child. It must let you know this decision in writing, as well as why it has refused.

If the school refuses to evaluate your child, there are two things you can do immediately:

First, ask the school system for information about its special education policies, including parents' rights to disagree with decisions made by the school system. These materials should describe the steps parents can take to challenge a school system's decision.

Second, get in touch with the Federation for Children with Special Needs by calling (800) 331-0688. The Federation is a great resource to learn more about special education rights and responsibilities under the law. The Federation's Parent Training and Information staff can tell you what steps to take next to find help for your child. 

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The National Council on Disability (NCD) cordially invites you to attend a community briefing on critical civil rights issues for people with disabilities at the Federal Reserve Bank in Boston, on September 19 from 10-4 p.m. They will briefly share some of the key findings and recommendations in their reports on federal civil rights enforcement of the Americans with Disabilities Act, the Individuals with Disabilities Education Act and the Air Carrier Access Act. Following each short presentation, there will be time for attendees to discuss these findings and recommendations and how they relate to your experience at the local level. NCD also will give an overview of their latest work, A Strategic Action Plan for Disability Civil Rights Enforcement for the Next Decade.

If you are a person with a disability, a disability or civil rights advocate, parent, service provider, or otherwise interested person, please come give us your input. For more details and registration information please see NCD's website, www.ncd.gov, or call Laurie at the Federation, 800-331-0688 x182.
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Education after High School: Myths and Possibilities
As a parent, you see your child's life unfold and your vision for your son or daughter is a constant reminder of future possibilities. During their early years, ever-present demands of day-to-day home and school routines take precedence. Often discussions at school focus on therapies, supports, and what the student "cannot do" as opposed strengths and skills. High expectations and dreams can easily end up altered or erased. Adolescence and planning for adult life seem so far away . . . .

IDEA (the federal special education law) requires schools to begin transition planning for students receiving special education at age 14. Transition plans must be driven by a student's preferences, interests, and vision for adult life. All students' high school programs should thoroughly prepare them for desired post-high school goals. Parents need to encourage teachers and other school personnel to raise their expectations of students with disabilities as they work together to develop and implement comprehensive, long-range transition plans.

Postsecondary options mean school or continued learning opportunities after high school. They should be part of every student's future. Typically, students choose high school courses that support their dreams of college, technical school, or work. Students with disabilities need to prepare the same way. IDEA requires that IEPs contain a statement of the student's "transition service needs." The statement should identify the appropriate courses of study in high school that support the post-school vision. Participation in the general curriculum, including appropriate accommodations and/or modifications, is essential preparation for meaningful postsecondary options.

Myths about learning after high school:
1. True or False? You won't need to continue your schooling after high school.

False. According to education and employment experts, to earn a good living and participate in this technological culture, you will most likely need to continue your education beyond high school.

2. True or False? There is no Special Education in college.

True. In college there is no Special Education entitlement but there are supports and services. A student must present documentation of the disability so that a learning specialist at the college can design needed academic accommodations, such as extended time for testing. Find out more at the Office of Disability Services (may go by another name) at the college.

3. True or False? Students are in charge of their education after age 18.

True. At age 18, (the "age of majority") students make their own decisions including agreements about school after high school. Disability related information is confidential and at age 18 must come from the student.

4. True or False? "Ask my mother (father, teacher)" is no longer an acceptable answer.

True. The student must know about his or her learning strengths and weaknesses and how to communicate that information.

5. True or False? Postsecondary educaton means four years of full-time college.

Maybe true, maybe false. Learning after high school might include an adult education course, evening or day courses at a college, workshops and job training through your local vocational rehabilitation agency or employer. It's the student's choice that counts.

How can parents help?
· Discuss you child's visions and goals for the future and make sure the steps to achieve them are reflected in the IEP.

· While in high school, encourage exploration of many different work experiences to stimulate student choice and identify possible postsecondary and/or career options.

· Consider taking self-advocacy and self-determination courses to develop leadership skills, enhance self-esteem, and increase student participation at IEP meetings.

· Form a team with your child and his/her guidance counselor.

· Access as many learning opportunities in the general curriculum as possible and identify the supports necessary to succeed.

· Look for postsecondary learning opportunities during high school. Many colleges offer summer programs on particular topics or career exploration for high school students.

· Invite someone from the Office of Disability Services of a college to speak at a special education or high school PAC meeting.

· Visit the local community college early and often. Community college events open to all (plays, fairs, open houses) present low-stress ways to experience a college setting.

· Invite key adult human service agency representatives to IEP meetings. For instance, a Massachusetts Rehabilitation Commission (MRC) counselor can help design the steps to reach work-related goals.

To find out more:
· Visit the Guidance Department and/or career center in your high school.

· Check college catalogues. Call and ask if there are summer programs for high school students and how to apply for them.

· Ask your town librarian to help you locate all the places where information on postsecondary education is available

· Surf the web for governmental or professional organizations concerned with college experiences. For example, the federal Department of Education has a great site called "Think College Early" at: www.ed.gov/thinkcollege/early/educators/mind.htm

· Disability-related information can be found through AHEAD (Association for Higher Education and Disability) at: www.ahead.org

· For lots of other resources, go to the Institute for Community Inclusion website and click on Post Secondary Options www.childrenshospital.org/ici/forum/links.htm.
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Federation 25th Anniversary Gala- A Night to Remember!

On May 12, 2000, over 350 celebrants gathered at the Royal Sonesta Hotel to honor the Federation's twenty-fifth year as a national leader providing advocacy, training, and information services for families with children with disabilities and special health care needs.

The night began with a cocktail reception accompanied by sumptuous hors d'oeuvres and music, served in a scenic room overlooking the Charles River. As guests mingled, munched, and chatted, they bid on over 120 silent auction items. Donated goods, services, and gift certificates ranged from exquisite pieces of art to weekend getaways at places like the Red Lion Inn in the Berkshires.

Mary Richardson of WCVB-TV's Chronicle was emcee, providing wit, warmth and enthusiasm that captured the spirit of celebration throughout the evening. Professor Gunnar Dybwad, Honorary Chairperson, crystallized over 25 years of progress when he quoted from a speech he delivered in September 1974. His historical perspective reinforced the importance of continuing to strengthen and empower families and people with disabilities themselves. Hold Fast to Dreams, a video presentation by students from the Patrick O'Hearn Elementary School brought guests back to the present as students expressed their dreams for the future. Special musical entertainment was provided by Michael Heraty, an aspiring saxophonist who has realized many of the benefits of Chapter 766. We have come a long way! 

To further mark the accomplishments of the Federation, President of the Board, Dan Heffernan, announced the establishment of the Martha Ziegler Founders Award. [See Dan's speech following this article.]

Senator Edward M. Kennedy was presented with the first Martha Ziegler Founder's Award in recognition of his contributions to the disability community. Connie Garner, Disability Advisor to the Senator and parent of a child with special needs, accepted the award for Senator Kennedy. She spoke of her personal experiences raising a child with a disability and the challenges that arise for her family on a daily basis. She praised the Senator for his long-time record of promoting public policy that supports the lives of individuals with disabilities and their families.

The evening ended with a rousing applause and grand send off to the Bryant family who would begin bicycling across the country, from Townsend, Washington, to Bar Harbor, Maine. [See "Pedaling to Empower" update, p. 1 ] All proceeds from their efforts will support the establishment of a new program at the Federation. We are delighted to have had such an impressive cast of people to honor and recognize. It was a night to remember! Special thanks to all of those who attended the 25th Anniversary Gala. It is through the collective support of those who volunteered their time, energy, and financial support that we are able to continue to grow to meet the challenges of the next century. Our special thanks to the following contributors:

Silent Auction Donors
Advantage Skin Care, Alden Merrell, Appetito, Arthur Murray Dance Studio, B&D Deli, Barber Brothers Florist, Bath & Body Works, Berkshire Theater Festival, Berlitz Language Center, Bertucci's, Bobby Orr, Bose Corporation, Boston Duck Tours, Boston Marriot Copley Place, Boston Marriot Long Wharf Hotel, Boston Tea Party Ship & Museum, Brattle Book Shop, CafŽ Nicholas, Candella, Cellular One, Charles River Canoe & Kayak, Chef Chow's House, Children's Museum of Boston, Children's Story Toy Store, Clayroom, Coolidge Corner Theatre, Cottonwood CafŽ, DeCordova Museum, Direct Tire, Eliane Markoff, Eliot Hotel, FAO Schwartz, FEI Theaters/Capital Theatre, Fire Opal, Five Seasons Restaurant, Garden Botanika, Hair by Hanna, Harvard Book Store, House of Blues, Iggy's, Jessica Vohs, Jose Mexican Restaurant, JP Licks, Ka Bloom, Kokopelli Chilli Co., Kosmeticka European Skin Care, Kowloon Restaurant, Learning Express, Linwood Grill & Barbecue, Liquid Hair Studio, Louis of Boston, Lucia Borges, Marco Polo Gift Shop, Meridien Hotel, Milano's Restaurant, MIT Endicott House, MotoPhoto, Mundi International Book Store, Museum of Fine Arts, National Amusements Inc., New England Mobile Book Fair, New England Rug Gallery, New Repertory Theatre, New Words Bookstore, No Kidding, Ocean Edge Golf Course, Party Favors, Party Needs, Peabody Essex Museum, Peet's Coffee, Placewares, Red Lion Inn, Relax The Back, Richard Joseph Hair & Day Spa, Roche Bros. Supermarket, Royal Sonesta Hotel, Salone Di Bellaza, Sandwich Liquor Store, Schoenhof's Foreign Books, Seaport Hotel, Skip Jacks, Starbuck's Coffee, Stone's Throw, Suffolk Downs, Super Fitness Centers, SuperCuts, Terra Firma, The Maids, The Pear Tree, The Pillar House, The Wellbridge Center, The Wrap, Tom Bernardo Embroidery Hand Screen Printing, Toysmart.com, Vinnie Testa's, Vintage J.G.A, Wachusett Mountain, Washington Square Tavern, Wheelock Family Theatre, Wild Goose Chase, Zaftigs

Friends of the Federation
PricewaterhouseCoopers, LLP & State Street Global Advisors

Sponsors
Cutro Family, Dan Heffernan & Michael Weisman, Kotin, Crabtree & Strong, LLP, Wagner Stott Mercator, LLC

Table Sponsors
Anonymous, Bostock Family, Bramson Family, Heller School, Brandeis University, Peter Brennan & Family, De Noble Family, Deutsche Bank, Eric Dannheim, Heraty Family, Marsano Family, McLaughlin/Lawlor/Downer Family, Kerry & Dennis Megley, Mittelman Family, Mr. & Mrs. Bruce Monaco, J.P. Morgan, Mellon Private Asset Management , Michael L. Munson Performance Specialists Group LLC, Special Needs Advocacy Network, Porter Family/ Craig Szeman/ Alperin Family, Scavone, McKenna, Cloud & Co., Susan & Robert Schechter, Schneider Reilly LLP, Van Der Moolen Specialist, USA LLC

Other Contributors
David Clausen, Edelstein & Co, Donald and Nancy Jones, Jr., Brian J. McLaughlin Private Foundation, Peter Murphy, Patrick O'Hearn School, Edward Reiss, Solomon Roth, Alfred Smith, Sun Life of Canada, Gordon and JoAnn Watkins.

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The Board Honors Martha Ziegler

ÒAs the Board prepared for this special occasion, we wanted to find a suitable way to acknowledge the accomplishments of Martha Ziegler, our founder and first director. Martha brought her dreams to their fulfillment in the establishment of the Federation and subsequently with the establishment of the national parent center network. We decided that a lasting tribute to Martha would be to establish an award that would bear her name and continue her legacy. Therefore, this evening we are establishing the Martha H Ziegler FounderÕs Award.

ÒMartha, it is with gratitude and deep-felt appreciation that we recognize your work and inspiring leadership. On behalf of the Board of Directors, we thank you.Ó
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The Hausslein Parent Leadership Awards

Excerpted from an article by Beth Dworetzky in the Early Intervention Parent Leadership Project's Parent Perspective newsletter.

Last year, staff from the Massachusetts Department of Public Health (DPH), the lead agency for the early intervention (EI) system, and the Early Intervention Parent Leadership Project, created a mechanism to allow families to take a leadership role in creating new supports for themselves. Parents who wrote their ideas and met certain criteria received a $1000 award to fund and implement their initiatives.

This award was named the "Hausslein Early Intervention Parent Leadership Award" to honor Evelyn Hausslein's life time work of nurturing families and children of all ages, in hospitals, in schools, and in communities. Evelyn, a long-time staff member at the Federation, was the founding director of the Federation's Early Intervention Training Center.

THE HAUSSLEIN AWARDS CEREMONY
Attending a meeting in an ordinary meeting room at the Holiday Inn in Worcester on June 7th, 2000, was anything but an ordinary experience. The room was filled with an extraordinary crowd of people--the Hausslein Early Intervention Parent Leadership Award Recipients and the Award's namesake, Evelyn Hausslein! These parent leaders came together to be recognized for their hard work and to give presentations about their Award Projects.

Eighteen parent teams received Awards for their unique projects, briefly summarized in the categories below:

Communication
· Adult Course in Child Sign Language, designed by parents, for parents, EI staff, and community providers, to enhance communication with their children with speech and language delays.

· A 6-week course in Total Augmentative Communication that offered concrete strategies for communication with children with speech and language delays.

· Computer Library of Speech and Language Software, to be used by EI staff with EI children who received group services alongside children not in early intervention. The software was also available for families to borrow for use at home or at public access computers.

· Children's Book-Making Project, based on the idea that "children learn from pictures," for making personalized picture books.

Parent Mentorship around Transition Support
· A Parent Support and Mentorship Program, to train families experienced with EI to mentor families new to EI, along with a support group for families.

· Refrigerator Magnets, with the EI contact information and space to add emergency or frequently called numbers. The magnet, along with a welcome letter, written by families, is distributed to each new family. 

· Transition from EI into special education, a network of graduate EI families and special education Parent Advisory Councils (PACs), to help families benefit from the expertise and experience of families who have already transitioned from early intervention to the public school system.

· Parent-to-Parent Connection, to match parents who have been through transition with families who are approaching transition, along with information about community programs that families were accessing and the accommodations being made to include children with special needs.

Building Community Connections
· Boston Metro Community Playgroup, to increase awareness of EI services and to provide opportunities for children in EI to interact with community children.

· Family Exploration Project, to help families explore community attractions outside of EI child/group services.

· Parents as Teachers Project, to create an integrated playgroup for children with multiple disabilities.

· Special Needs Book Collection, created at a local library, to provide up-to-date disability-related resources. Parent Support

· Kids With Tubes Newsletter, an expansion of a parent-run support organization, to share information and resources with families and caregivers of tube-fed children.

· Common Bonds, a parent support group, to provide a diagnosis-specific networking opportunities for parents of children with autism. They also purchased books and created a lending library.

· The Down Syndrome Group, to provide networking and social opportunities for families who have young children with Down Syndrome.

· The Down Syndrome Resource Group, to purchase books for area libraries that would be available to any family via the interlibrary loan system.

· Less Stress Support Group, to continue to provide opportunities for parents to share the joys and challenges of being parents.

· The Education and Medical Awareness Project, a series of three workshops for families, early intervention staff, and community members to share information and reduce families' isolation, especially for families living in rural areas.

Each of these Parent Teams and their collaborators deserve a standing ovation for their ideas, commitment and energy. They have elevated parent leadership to a new level in Massachusetts.

For more information about any of the projects, or to receive an award application (you must be a parent of a child who is currently receiving early intervention services), please call the Parent Leadership Project at 1-877-35-EI-PLP. 
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Celebration 2000 and Abilities Expo
Abilities Expo, the major national show for independent and assisted living products and services, is coming to Boston on October 20-22 (Friday-Sunday). The Expo will be at the Bayside Expo Center in Boston. Abilities Expo is like a home show for people with disabilities of all ages. More than 200 exhibit booths will display products and services along with a full program of consumer education workshops each day. Admission is FREE.

Featured at the Expo will be Celebration 2000 Career Fair, matching employers and people with disabilities. The Massachusetts Rehabilitation Commission (MRC) will host numerous special events during the two day celebration which will include an Exemplary Employer Awards luncheon, Gala Awards dinner, entertainment, and speaking engagements by top level officials. The celebration will feature educational seminars, an Art Exhibit, and a two-day Career Fair expecting to draw over 100 employers interested and committed to hiring qualified candidates from the disability community. Participating employers will include local businesses, national corporations, and staffing agencies.

For more information, visit Abilities Expo website at www.abilitiesexpo.com and Celebration 2000 at www.state.ma.us/mrc/celebration2000.htm.

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OSEP Commends Mass EI Service System

In spring 1999, U.S. Department of Education monitors visited Massachusetts to assess its compliance with IDEA (the federal law governing early intervention services and special education services for school-age students). The monitors visited three early intervention (EI) programs and spoke with scores of family members, service providers, and others about the services available to infants and toddlers and their families.

The just-released report of the federal monitors commends the Department of Public Health (DPH) for the Early Intervention (EI) system. Among the strengths noted were:

· Strong parent participation in service delivery at local and state levels;

· Early identification of infants and toddlers and their families in need of EI services;

· Effective use of funds to provide expanded services to infants and toddlers who are at risk for developmental disabilities;

· Interagency collaboration that helps ensure continuous services and community supports; and

· Leadership by DPH to affect change in the system so that all EI services are provided in natural environments.

OSEP also gives suggestions for improving EI services for infants and toddlers with disabilities. For example, the federal report recommends that efforts be devoted to:

· ensuring consistent application of IDEA requirements for EI across the state;

· using children's and families' typical routines in deciding where to provide services within their community, and

· training EI staff on ways to provide services which build upon family and community life.

To ease children's transition at age three from early intervention to preschool, the report recommends:

· training and guidance for EI staff on finding community options for children who do not qualify for special education services, and

· specific training for parents on how the rules and procedures governing special education differ from those governing early intervention services.

The report identifies one area of non-compliance: justification was not always given for the provision of some early intervention services in settings other than natural environments.

Although the report was just released in June, DPH was aware of the issues and recommendations thanks to their own in-state monitoring and to their active participation in the federal monitoring activities. Immediately after the monitoring visit, DPH convened a group of family members, early intervention service providers, and representatives of community and state agencies to develop a plan to address the concerns. This plan began to be implemented last summer and is in the process of being revised to reflect progress and other changes in the system.

The monitoring report can be found on the Federation's web site at www.fcsn.org.

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Family Opportunities Act of 2000
On July 12, before an overflow hearing room on Capital Hill, two panels of experts, including three families of children with special needs, told members of Congress why the Family Opportunity Act (also known as S2274 or H4825) is so important to all of us. Staff members of the Senate Budget Committee called it the "best hearing they ever had."

This important bill would allow families, who have children with severe physical and emotional disabilities and special health care needs to purchase the excellent pediatric benefits of Medicaid. Today, thousands of families nationwide must turn down job promotions and pay raises, and in some cases relinquish custody of or institutionalize their children, so that their children can be covered by Medicaid. 

"These families are forced to make impossible choices that no parent should have to make," said Massachusetts Senator Kennedy, one of the introducers of the bill in March of 2000, and a member of the first panel of the hearing. Kennedy, along with Congressman Sessions (TX), and Arkansas Governor Huckabee, gave rousing endorsements for the bill, calling upon Congress to ensure that this bill is signed into law this year.

Then a panel of parents put a human face on the realities of family life with a child with special health care needs. Air Force Staff Sergeant Gordon Fay, accompanied by his daughter Lauren, who has Angelman's Syndrome, described the impact on his family:

"The fear I might lose Medicaid . . . will now be a reality in approximately 6 to 8 months because the promotion will take me above the income threshold. The extra money that I would gain . . . would not come close to offsetting the costs of necessities for Lauren, such as diapers, medicine, medical equipment, therapies."

He was followed by other parents who told stories of lost pay raises, bankruptcies, placing a child in state custody to obtain services, difficulties in obtaining mental health services, and the effects on a family when care is delayed or denied.

The three families who testified were bolstered by a room full of advocates, including Family Voices policy staff who had helped organize the hearing.

Another provision of the bill establishes Family-to-Family Health Information Centers in every state, to be run by experienced families. These centers will provide information, education, and assistance to help families negotiate our complicated health systems.

We know how important Medicaid access is to families in Massachusetts who have been able to buy Medicaid through CommonHealth. We also know how crucial family-friendly information, from other families, is in helping families find the resources their children need.

The hearing was an excellent opportunity for "Family Voices" to be heard nationally on these issues. This was just the momentum needed to educate not only members of Congress, but also the public, about the needs of our kids and our families.

We salute Massachusetts' own Sen. Kennedy for his continued national leadership in developing family-friendly policies for kids with disabilities and their families. Let Senator Kennedy, Senator Kerry, and our Congressmen know we appreciate their efforts on behalf of our families and need their continued support. 

Check out our Family Voices website (www.familyvoices.org) for more details on the Family Opportunity Act (FOA) , S2274 and H4825.

Families to Interview Managed Care Organizations in Massachusetts
Family Voices at the Federation has recently been awarded a grant from the Packard Foundation in California to continue activities documenting how health care is working for children with special health care needs around the country. In Massachusetts, these efforts will be expanded in a collaborative initiative by Family Voices and New England Serve. Plans are under way to recruit, train, and support parents to conduct interviews with health plans across Massachusetts to gather information about their current capacity to identify and serve children with special health care needs.

Family Voices Reports on "Your Voice Counts!" Survey Available
The 2nd edition of What Do Families Say About Health Care for Children with Special Health Care Needs? Your Voice Counts!! the Family Partners Project Report to Families has just been printed. Contact jcooper@fcsn.org to request a copy.

Family Voices and the Federation Urge all to GET INVOLVED!
Campaign issues are not just about politicians-they are about you. If elected, what a politician decides to do in office can have a lasting impact on your life, your loved ones, and your community. Medscape and CBS Healthwatch are inviting you to share your stories.

· Can your family afford adequate healthcare?

· Would more research into a particular disease give you hope?

· Have you benefited from good legislation?

To tell your story, go to http://www.medscape.com/medscape/promo/public/camp2000mscp.html

New Initiative to Learn about Quality Health Care for Children
The Federation will be collaborating with Health Care for All's Children's Programs on a Cummings Foundation grant. The grant aims to build an informed group of parents, able to influence public policy as it pertains to the way medical services are delivered to their children. The Federation will be inviting parents raising children with special health care needs to regional workshops or focus groups to find out how these families perceive the quality of their children's health care in Massachusetts. The project will also focus on health care for immigrant children and children in rural areas.

Resource materials and helpful websites will be compiled and made available to families. Federation staff members Barbara Popper and Polly Sherman and the Family Ties regional coordinators will participate. The Federation is excited about the opportunity to continue our collaborative efforts with Health Care for All through this project. (Their website is www.hcfama.org.)

For more information about any of these health related activities contact kcruz@fcsn.org or jcooper@fcsn.org.
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