INCLUSION MATTERS

Our conference and AGM held this past April in Cambridge was celebrated as a success. There were close to one hundred participants and lots of helpful ideas were shared and networking that happened. Jack Pearpoint was there to accept the Family Alliance Heart Award in honor of Marsha’s contributions to the inclusion movement. Janice Fialka gave an inspiring talk on the importance of developing good supportive relationships with the professionals that are constantly invading our privacy, obviously out of necessity, but an invasion nonetheless. Planned Family Network assisted in the coordination of the conference and we learned about the activities happening in the Cambridge/Kitchener area, specifically about the process they have embraced in planning for the future of their adult children. John Lord presented about Individualized Funding and the break out sessions provided parents the opportunity to ask questions, tell their stories, and gain new information. Following the success of last year’s conference and AGM that was held in partnership with Family Alliance Ontario, we have agreed to repeat this format for next year. Look for the notice in this newsletter. You will also receive a mailing in the New Year with more details.

We hope you like the minor changes that have been made to the newsletter, most notably the name change from INTEGRATION NEWS to INCLUSION MATTERS!

You will also notice that we are slowly moving toward a new name: Integration Action for Inclusion, a change from Integration Action Group. This will be a slow process but we want the world to start talking about and expecting inclusion, not integration.

This issue of INCLUSION MATTERS! has a “Back to School” theme. There are a few exceptions, but the main focus is education, how parents can and should advocate for an inclusive education for their child and where one can find support to do so. The challenges and the opportunities that families face daily to ensure that this happens are still a reality, so it’s important to acknowledge the stories of good things still happening.

We are also changing the language in our literature to reflect where we are at philosophically by replacing “integration” with “inclusion”. Unfortunately over time, the definition of integration has become extremely fractured (we see examples of ‘reverse’ integration, ‘partial’ integration, ‘social’ integration, ‘timetabled’ integration). It makes more sense to talk about people with disabilities being included as active contributing members in whatever community they are presently involved, whether it be school, employment, leisure or living arrangements. Integration implies that one was never part of the whole before joining the others. Inclusion assumes unconditional membership and participation.

have to go in our quest for an inclusive society, I look for affirmation in my favourite quote from Benjamin Hoff’s, The Te of Piglet:

“It’s hard to be brave,” said Piglet, sniffing slightly, “when you’re only a Very Small Animal.” Rabbit, who had begun to write very busily, looked up and said: “It is because you are a very small animal that you will be Useful in the adventure before us.”

........and so we will go on, however insignificant we imagine ourselves to be, we will make a difference and, it will be worth the effort.

Let us know what you think! If you have a story to share, or a comment to make, please forward it on to me. I am always looking for new articles for upcoming issues. Patty Gillis

Integration Action for Inclusion is an action-oriented provincial association, consisting of parents, educators and concerned citizens. Through its membership it advocates for inclusion, improved attitudes, practices, policies and laws that promote inclusion in education and the community.

Lori Olivier,President,	North Bay
David Gilmour, 1st Vice-President,	Kingston
Clayton Eaton, 2nd Vice-President,	Princeton
Judy Freymond,	L’Amable
Patty Gillis,	London
Wendy MacDonald,	London
Mary Madaleno,	Elmvale
Verlyn Rowett,	Cambridge
Kobie Shahiri,	Toronto
Cathy Tadres,	Markham
Patrick Worth,	Toronto

The Directors are there to serve you. Your calls are welcomed. It is our goal to reach every community throughout Ontario. If you are interested in becoming a Director, let us know.

Integration Action for Inclusion wants families represented on their local Special Education Advisory Committee. If your school board does not have IAG representation then, please try to find someone (if you are unable) to attend the meetings. It is very important to have an advocate speaking on behalf of inclusive education.

Should anyone wish to be nominated, the Board would be more than happy to send a letter recommending that you join your local SEAC on behalf of IAG.

The following is a list of IAG’s SEAC reps. If we have left someone out, please let us know.

Lisa D’Amore	(519) 250-1498
Greater Essex County District School Board
Michelle Friesen	(519) 975-2292
Windsor-Essex Catholic District School Board
Patty Gillis	(519) 642-2229
Thames Valley District School Board
Mary Madaleno	(705) 322-1648
Simcoe Country District School Board
Aline Shaw	(807) 548-1729
Keewatin Patricia District School Board
Janice Strickland	(519) 473-4686
London Catholic District School Board
Jackie Warwick-Mathieu	(705) 737-9948
Muskoka-Simcoe Catholic District School Board
Susan Blekkenhorst	(807) 935-2797
Lakehead District Public School Board
IAG’s PAAC (Provincial Parent Association Advisory Committee) Rep:
Marilyn Dolmage	(705) 329-3316

MACSE (Ministers Advisory Council on Special Education) Rep for Developmental Disabilities:
Janice Strickland	(519) 473-4686

On Tuesday, October 2, 2001, at a regularly scheduled meeting, SEAC unanimously supported a motion brought forward by Alison Morse, representative for the Easter Seals Society, and seconded by Linda Vince, representative for the Associations for Community Living, that requested administrators from the board to NOT seek out negative labeling and diagnosis for students with intellectual disabilities for the sole purpose of obtaining funding from the Intensive Support Amount envelope.

Whereas the Special Education Advisory Committee of the Thames Valley District School Board recognizes the right of all students to be treated with respect and dignity, be it resolved that school board staff or agents do not seek Doctors Certificates that assign [Diagnostic and Statistical Manual – IV] DSM-IV Codes from the International Classification of Diseases to describe students with developmental disabilities in order to prove eligibility for ISA Grants.

The motion speaks to the beliefs of SEAC members that the language used in the DSM-IV codes are demeaning and derogatory and are not appropriate to be included in the educational records of any student. If Doctors Certificates, which include DSM-IV codes, are found in the educational files of students, we believe it would be an embarrassment to the Board and an insult to all the individuals with developmental disabilities (and their families) who have fought so hard against such negative labeling. All students deserve to be treated with respect and dignity.

“It is difficult to describe the outrage we are feeling that our daughter and other children will be labeled or described with terms such as “Moron” “Imbecile” “Feeble-minded” “High-grade defect” “Moderate mental sub normality” or “Idiocy”. These terms are all part of the definition of DSM - IV Codes: 318.0 318.1 318.2 and 319 which will be used by school boards to determine eligibility for ISA Grants.”

As a follow up to the motion, SEAC plans to write to Janet Ecker, expressing our concerns with the new Intensive Support Amount Grant Profiles and the increased emphasis on medical diagnosis and medical terminology.

SEAC members are concerned about this trend to a medical approach to assessment of student need and will ask that the Ministry of Education reconsider the ISA Grant profiles. In particular, SEAC members will also ask that the ISA Grant Profiles be revised to reflect assessment requirements which are related to the educational programming needs of the students, and which reflect the capacity of the boards to complete the assessments.

Ms. Ecker will also be asked to immediately amend the ISA Grant profile for students with developmental disabilities and remove reference to DSM-IV Codes, and to reconsider the other profiles which include DSM-IV codes or assessments that are not related to the educational programming needs of students. In addition, the Ministry will be asked to consider evaluating the assessment capabilities of boards and, if necessary, develop the strategies necessary to increase this capacity.

SEAC has a responsibility to respond to the Ministry if they feel that the education of students with exceptionalities has the potential to be compromised. The actions of the Thames Valley District School Board’s SEAC may not effect any changes to the ISA funding model, but at least the effort was made and a statement was declared.

We urge SEAC’s across the province to take similar action, the more voices that speak out, the louder the message, and then perhaps the Minister of Education will hear us and listen.

MACSE is an advisory committee that consists of members appointed to represent various “constituencies”, with an interest in matters related to the establishment and provision of special education programs and services to the students in the Province of Ontario. Members represent students with different “exceptionalities”, and as well, there is also a trustee, Superintendent, psychologist, social worker, physician, and staff from other government ministries (MCSS; Health; Training, Colleges, and Universities, etc.). More information, such as membership and annual reports, are available on the Ministry of Education web site (www.edu.gov.on.ca)., under the section “Agencies, Boards and Commissions”. There are also instructions on how to receive minutes of MACSE meetings.

• responding to proposals or positions of the Ministry of Education, or other ministries;

•identifying concerns with the delivery of special education programs and services for exceptional pupils; •providing information, advice and recommendations for ministry consideration.

•collaborating with the organizations they represent on issues pertaining to exceptional pupils;

MACSE meets 3 times a year for 1 1/2 days at a time. Members are appointed for a three-year term, and currently, the representative for students with the label of Developmental Disability is Janice Strickland. If anyone wishes to give input to MACSE, a format can be provided by contacting Janice at (519) 473-4686, or e-mail djstrick@home.com.

I have had the honor of representing IAG on “PAAC on SEAC” for the past 2 years. So many acronyms! So many issues so vitally important to students, their families, schools and communities.

PAAC means Provincial Association Advisory Committee. Representatives are appointed by those provincial associations - such as Integration Action Group - eligible for membership on the Special Education Advisory Committees of school boards across Ontario. SEACs have a vital role, under law, to receive information about school board funding and practices, and to offer advice in return. PAAC considers the impact of provincial policies upon school boards, and can help SEACs be more effective. Therefore PAAC is a key link in a complex chain - attempting to improve educational opportunities.

It was an important day, back in June 1994, when the Ministry of Education brought together many provincial associations to announce and discuss a major policy shift towards “integration” - saying regular class placement should be “the norm” for exceptional students. We’re still not there yet - but now the Ministry says there are too many parent organizations in Ontario for such consultation. PAAC can help the Ministry to communicate with SEACs about the many special education policy changes they impose upon school boards. It seems that government only rarely - of late - asks for PAAC’s opinion. But because PAAC members are in touch with how Boards implement Ministry policies, we can provide important communication and networking.

It will not surprise you that there are many things upon which PAAC members do not agree. IAG has allies among the other PAAC organizations who belong to the Ontario Coalition for Inclusive Education, but we find great resistance from those who defend labeling and segregation. We are trying to concentrate on shared concerns so that the Ministry will hear our stronger collective voice - for example, about special education funding and student and parental rights, which are of vital interest and importance to SEACs. PAAC wants to make sure we get the information we need - both from Ministry liaison people available to us, and from our organizations and their SEAC reps. PAAC is reconsidering how we function with the Ministry, MACSE, our organizations and their SEAC reps. I would like to hear from IAG SEAC reps about the issues that are of your greatest concern. To represent IAG is to challenge the status quo, to go beyond “special education” and promote effective education - excellence and equity, for all. Onward and upward!

Support to learn better together; as a member of a regular class; going to our own “natural” neighbourhood school; with

committed to supporting individuals who have a disability, their families, friends and advocates. The primary focus of the Coalition is

The Coalition supports the following principles: A quality education is an inclusive education. All students can learn and develop. Every student has unique qualities, interests, abilities, and learning needs. All students have the right to an education that will prepare them to live and participate in the real world. Segregated education contributes to further, life-long segregation. Labels hurt people and do not determine the educational needs of students. Education systems should be designed and education programs implemented to take into account the wide diversity and needs of students. All students benefit from collaboration and cooperation among their home, their school and their community. Inclusive education benefits all students and helps build stronger communities, which are based on acceptance and equity.

The Coalition has and continues to advocate for inclusive education by meeting with government officials, disseminating information, and by

managing province-wide projects. Since its inception there have been 4 initiatives that the Coalition has been responsible for: the Building Inclusive Schools project was a 3-year project that ended in 1998. It was co-funded by the Ministry of Education, OACL and CACL. Twenty schools throughout the province had the opportunity to demonstrate a vision, a plan of action for professional development, and restructuring and collaboration towards an inclusive school community. ALL Teachers- ALL Students is a joint initiative with the Faculty Education at York University and is funded by OACL to work collaboratively with Faculties of Education across Ontario to restructure teacher-training programs around inclusive education. The Building For Inclusion initiative is a 2-year project funded by the Ontario Trillium Foundation, to promote the rights of all students to a good education by helping families achieve better IEP’s for their children. Students Leading Students is a 1-year project funded by OACL and managed in partnership with York University to enable secondary school students to have an impact in making their schools more inclusive where, regardless of ability, everyone participates fully together in the life of their school.

The Coalition is in the process of setting up a web site, but currently, information is available on the OACL web site (www.acl.on.ca/) under Inclusive Education.

Developmental assessment is a process designed to deepen the understanding of a child’s competencies and resources and the learning environments most likely to help a child make fullest use of their developmental potential” Source: Zero to Three

There is a lot of talk about psychological testing (the schools may call them intelligence, standardized, norm referenced or educational tests / assessments) to verify or support ISA funding levels. It is important that parents have all the information to understand best practices as it relates to the use of any assessment. There are some tests done by your child’s school that assess their achievement. Other tests such as psychological tests require you to give your consent.

The literature clearly states that assessments that offer little more than scores, clinical labels and focus on the negative with little or no connection to recommendations or curriculum strategies are clearly done in vain. Parents need to understand that the real purpose of assessment is to develop hypotheses about and give direction to or for individual education planning. The use for assessment to verify levels of supports with little regard to educational value is clearly not considered to be best practice.

i) What is the purpose of the assessment tool – eligibility, educational planning, program evaluation or comparison with peers?

ii) What population was the assessment developed for (norm referenced) – who, where( geographic location, cultural factors ), and when (more than 10 years old)

iii) What is the assessment measuring? Is it a standardized tool? This means …… What is the

reliability? Are the scores that the test gives accurate, consistent and not influenced by the environment?

iv) Is the data valid? Meaning, is the tool appropriate, meaningful and as useful as it claims to be? Does it measure what it says it is suppose to measure?

v) Is it a functional tool? This means it covers how a child interacts with their environment and is not necessarily a standardized tool.

vi) How is the scale administered? Is it done by observation, direct testing or by interview?

With any assessment process if there is confusion about the purpose of the assessment, there is likely a strong potential for results to be inaccurate and lacking real educational value. Assessments to be deemed useful to educational value must encompass the following attributes:

¨ The assessment must be intervention or program based, which means it must be curriculum based or linkable to curriculum objectives.

¨ The assessment must be child relevant and based upon some reputable development orientation.

¨ The assessment must be adaptive and allow for modifications for scoring of children with physical and developmental challenges or with little or no language.

¨ The assessment process should be multiple and complementary. This refers to the use of several instruments used in different settings (e.g. home, school) by different sources (e.g. parent, teacher, professional)

Parents must be very skeptical about the focus on daily living skills and purely self-help adaptive skills, because these assessments provide no relevance to education or curriculum. The use of tools such as the Vineland Adaptive Behaviour Scales for the above reasons makes it an unacceptable assessment tool.

The Canadian Psychological Association states, “In elementary or secondary education, a decision or characterization that will have a major impact on a test taker should not automatically be made on the basis of a single test score. Other relevant information for the decision should also be taken into account by the professionals making the decision. (Primary)

A student should not be placed in special classes or schools, for example, solely on the basis of ability test

score. Other information about the student's ability to learn, such as observations by teachers or parents, should also play a part in such decisions.” (Guidelines for Educational and Psychological Testing, First edition 1987 © CPA 1996)

As a parent you have the right to refuse psychological testing. The Coalition has sample letters to support this decision and you can have this letter placed in your child’s OSR (Ontario Student Record). You may also ask to have information removed from your child’s OSR as stated in the Ministry of Education policy governing the OSR. “If the parent(s) or adult student is (are) of the opinion that the information contained in the student’s OSR is inaccurately recorded or that it is not conducive to the improvement of the instruction of the student, the parent(s) or adult student may request in writing that the principal correct the alleged inaccuracy or remove the information from the record.” (Ontario Student Record (OSR) Guidelines, 2000, Ministry of Education)

This should be the focus of any assessment or testing done in the name of education in Ontario.

Ontario Student Record (OSR) Guidelines, 2000, Ministry of Education; www.educ.gov.on.ca

The National Council on Measurement in Education, Standards for Educational and Psychological Education, 1997

Linking Developmental Assessment and Early Intervention: Curriculum Based Prescriptions, 2nd Ed, Bagnato, Neisworth and Munson Zero to Three The National Centre for Clinical Infant Programs, A New Vision for Assessment

Information compiled for the Coalition for Inclusive Education by Sheryl Ragobar & Susan Howson,

“Students Leading Students” will help secondary school students to learn about disability, about how students (with intellectual disabilities) can be educated in regular classes, and how it’s a better way to educate them,” says Patty Gillis, chair of the Coalition for Inclusive Education.

The Coalition is a provincial organization consisting of ten members: the Ontario Association for Community Living, the Canadian Association for Community Living, Integration Action Group, Family Alliance Ontario, People First of Ontario, Early Childhood Resource Teacher Network of Ontario, Youth Involvement Ontario, the Down Syndrome Association of Ontario, and Brampton Caledon and Lakehead Associations for Community Living. The Coalition has obtained It Takes a Village funding to implement ‘Students Leading Students’, a means by which secondary school students will lead their peers in understanding and accepting students who have intellectual disabilities.

Patty says that the Coalition learned from another project it was involved with, Building Inclusive Schools, that it is the youth themselves that make the most impact in a school setting. “In the Building Inclusive Schools project, we learned that the impact was felt most when stories were told by self-advocates and students,” she says. “Students really embrace these ideas.”

The project, in partnership with York University’s Faculty of Education, is taking place in six boards of education located in Ottawa, London and Toronto, both Public and Catholic, the one in Ottawa being the French Catholic board. Teens from the various schools will be brought onto a team, including a student who has a disability, a teacher advisor, and an adult mentor who is a self-advocate. This team then will arrange to take a message of acceptance and understanding to classes within their own school and as well as other schools.

Patty explains that the project is not entirely up to speed yet, but before long the project’s coordinator, Sofia Karambatsos, a York doctoral student in the Faculty of Education, will be visiting each school with mentor, Patrick Worth, to get the ball rolling. By the end of January, Patty says that the project should be looking at the things that worked and those that haven’t. “The students will then go back to their school to train others.”

For more stories about OACL’s Community Inclusion Projects, visit their website at <www.acl.on.ca>

Reprinted with permission of TASH. For more information about TASH, call 410-828-8274 or visit TASH's web site at www.tash.org

For about thirty years now, I’ve been thinking about the risks and how to manage them. I remember one of the things that made me start thinking about different kinds of risk a long time ago. It was an article by Bob Perske (1972) about the dignity of legitimate risk. I’m not sure now if that was the first time I read something by Perske that made me think and rethink things, but I it was certainly not the last. His work over the years has had a wonderful impact on a lot of us, making us look at things from a slightly different perspective, making us think a little differently and, more importantly, making us feel differently about things.

I had been working in a large institution for a long time then. One of the main reasons that people ended up there was that someone wanted to protect them from the outside world. I have no doubt that there really were some risks that they were spared by being “put away,” but there were a lot of other risks that increased. Hepatitis, a wide variety of parasites and other communicable diseases were common. In the crowded and understaffed dining halls, people choked to death because they learned to stuff food in their mouths as quickly as they could before it was stolen by another resident or taken away staff. Everyone was neglected. Most were assaulted, and many were sexually abused.

I thought of one young man who had recently died there. Another resident of the institution had gotten a small jar of peanut butter. It was his most precious possession, and he kept it in his shirt so it would not be stolen. One day, the glass jar slipped out and smashed on the floor. As the former owner of the peanut butter stood in shock, Mark, as I’ll call him here, deftly scooped up the mixture of broken glass and peanut butter, and he ate it. Of course, eating broken glass is never a good idea but broken glass mixed with peanut butter is a lot worse. Mark seemed to be recovering, but suddenly died a couple of weeks later. I felt sad about it, but reading that article, tears of grief turned to tears of rage. I wanted a gravestone for Mark that said, “Dead at 24. Protected from the risks of a normal life”. Since then, I think a lot about risk. In the middle of writing the paragraph above, my son’s school called to say, “David, got hit in the face by a soccer ball, and he’s bleeding from his nose and mouth.” By the time my wife Louise and I got to the school, David seemed fine, and most of the blood had been cleaned up. David’s disability makes it hard for him to protect himself when playing with other kids.

Nevertheless, David is in the game. The boy who kicked the ball is a friend of David’s. He comes over to play at our house from time to time. So are most of the other kids who were playing soccer that day. Furthermore, David has had no more and probably a lot fewer cuts, scrapes, bruises, bloody noses than most ten-year-olds I know. So, the risk of playing with other kids is a normal risk. Furthermore, it is a risk that David chooses to take. As parents there may be times when we have to step in because the risk is too high. When the risks are reasonable, however, why not let David make his own decision?

Louise and I would like to keep him perfectly safe, but the risks associated with being in the game are actually a lot less than the costs of keeping him out of it. He can get hurt playing with other kids, but that risk does not justify the cost of giving up his chance to have friends. About 150 years ago, one authority on risk management summed it up as follows:

‘Tis better to have loved and lost than never to have loved at all. (Tennyson, 1850).

A lot of the risk that people seem concerned about these days is the risk for abuse and exploitation. I’ve been one of the agitators that have been worrying people about this. I’ve spent a lot of the last 15 years trying to get people to see that violence is a huge problem for people with disabilities, so I am not going to trivialize it now. Nevertheless, I do need to say that misguided attempts to protect people can do more harm than good. I suggest two tests to determine whether protection strategies are appropriate. First, identify to what degree the risk is controllable and how much difference the prevention strategy is likely to make. Second, consider the cost to the individual who is being protected, particularly social and emotional costs.

For parents and family members who are horrified to learn that children with disabilities are more than three times as likely to be abused as other children, it is important to think about two kinds of potential abuse, intrafamilial and extrafamilial abuse. Intrafamilial risk is the most controllable. Many children with disabilities are abused by members of their own families, most often parents. The good side of this sad fact is that we actually have a lot more control over this. If as a parent or family member, we can honestly feel secure that our child and loved ones are safe with us and reasonably secure that he or she is safe with the rest of our family, we immediately remove a large slice of that increased risk. If some of us are not 100% sure that our child or loved one is safe with us, the most important thing we can do is to get the help we need. If anyone is suffering from depression, has anger management problems, or is having difficulty coping with stress, he or she needs to deal with those problems.

There are also reasonable strategies for minimizing risk for abuse from external sources. Choose caregivers and programs carefully. Use agencies that check police records and screen staff carefully. Ask agencies about their policies. Avoid agencies and programs that isolate you from your child. For example, if a day care has no unobstructed windows, makes you ring a buzzer to get in, then keeps you in the office while your child is brought to you, it is probably time to get your child out of there. Parents and families should have a way to see what things are like when visitors are unexpected. Of course, this does not mean that there is no security to keep strangers from entering, but security is not an excuse for isolation.

In considering the cost of violence prevention strategies, think about whether strategies empower or disempower the people who they are supposed to protect: better communication and sex education, facilitating appropriate social and sexual relationships, and giving people more power to choose and reject where they go and who they go with are all strategies that can keep people safer through empowerment.

Restricting people from doing what they want in order to keep them safe is disempowering. This does not mean that restricting an individual’s choices is always the wrong thing to do, but in my opinion many of us use it much too often. It should be used only when the stakes are high, harm is likely, and there is no empowering or even less intrusive strategy available.

For example, we would not allow our son to go out to the store by himself, because there is good reason to believe he would be in serious danger. For now, that restriction is justified. If he can learn to keep himself safe, however, that would replace a restrictive strategy for protection with an empowering one.

Risk can also be categorized by its political impact. There has been a lot of discussion of the relative risks of institutional placement and community alternatives.

Some researchers have suggested that deinstitutionalization has been accompanied by neglect, abuse, and increased death rates. Others have argued that this analysis is biased and that the risks are actually much higher in the institutions. Service providers and parents also have politicized risk at times. A social worker once told me about a group home they found where former residents of a large institution were kept in chains and abused. While they got the residents out, they did not report the abuse because they felt that the publicity would slow down the move to the community, which they believed was more important. The father of a young man who lived in an institution once told me that his son had been abused there, but he would not report it because he strongly believed that the institution was the best place for his son. In his words, he “did not want to drive another nail in the coffin” of the institution. In my opinion, both of these individuals are making a serious mistake. The moment we agree not to confront the problems of abuse and neglect because confronting the problem conflicts with some greater goal, we have accepted abuse as a permanent reality.

Risk in these arguments becomes a political pawn for a much broader agenda. As a researcher, I will tell you that I still believe that for risk of violence, neglect is

higher in isolated institutions, but I also need to say: (a) the comparisons are difficult to make in a completely objective way, (b) there are good arguments made on both sides, and (c) deinstitutionalization, in itself, has not and will not solve the abuse and neglect problem. The more important concern, in my view, is that politicizing the issue of risk for or against community living is wrong. Both sides need to pay more attention to solving the problem and less attention to whose agenda is served.

The living conditions in some group homes and other community-based living alternatives have been horrible (e.g., Horwitz & Boo, 2000). No one should have to live under those conditions. The concerns raised about death rates and other problems (e.g., Strauss & Kastner, 1996) among people returning to the community should not be simply ignored or repudiated by advocates for community living. People have a right to life in the community AND they have a right to decent living conditions. No one should have to choose one or the other, and realizing the promise of community living does not mean just being a little better than an institution.

A hundred years ago W.E.B. DuBois (1901/1969) wrote eloquently about the hardships faced by former slaves returning to the community. The problems that he identified were significant ones, and some people tried to use DuBois’ work to argue that abolition had been a mistake. DuBois did not let himself be drawn into the argument of whether emancipation might have done more harm than good. He did not ignore the problems to avoid the argument. Instead, DuBois insisted, that all people had a right to their freedom and a had right to decent living conditions. In much the same way, we need to face the risks of abuse and neglect in community settings squarely. We need to continue to push for community living, but we also need to push just as hard for quality services that keep people safe.

Du Bois, W.E.B. (1901/1969). The Black north in 1901: A social study. New York: Arno Press and The

Perske, R. (1972). The dignity of risk and the mentally retarded. Mental Retardation 10(1), 24-27

Strauss, D. & Kastner, T. A. (1996). Comparative mortality of people with mental retardation in institutions and the community. American Journal on Mental Retardation. 101(1), 26-40.

Dick Sobsey is Director of the Developmental Disabilities Centre at the University of Alberta, Edmonton, Questions or comments may be sent to dick.sobsey@ualberta.ca

Commission will begin a process of consultations on the “right to access education”. At all levels, barriers have been identifies (eg. funding, barriers at the post-secondary level) that are preventing students from accessing primary, secondary, or post-secondary education at all. Make sure you get involved and offer your feedback.

4. They form strong positive attitudes towards their children’s unique personalities, abilities and potential.

8. They recognize the potential contribution of their child’s typical peers and find ways to involve them.

10. They try to win allies within the education system: school board members, superintendents, principals, teachers.

12. They know what kind of support their children require in order to be included.

13. They make the school authorities justify the school’s position that it can fulfill their obligations better through segregating and congregating children with disabilities.

Orville Endicott is an advocacy lawyer for the Ontario Association for Community Living.

pleased to co-host, for a second year in a row, our Conference and Annual General Meetings

By: Miriam Edelson

(reprinted with permission from the Canadian Association for Community Living Update, Community Connections)

My Journey with Jake is the personal memoir of Miriam Edelson, the mother of a young boy who has a disability. Not an easy task for many people, Miriam openly shares her story, personal experiences, feelings and approaches that she has taken since the birth of her son ten years earlier. She describes a number of issues that face families who have a child with a disability and gives a glimpse of what life can be like for families.

While this book describes the experiences of one mother and legitimately illustrates the challenges and inadequacies of supports in the community, I didn’t find the book to represent the values and approaches taken by many parents who have a child with a disability.

Miriam appropriately paints a bleak picture describing inadequate, inappropriate and inflexible supports and services, devaluing of the child and family, reduced employment opportunities in particular for mothers, an increase in the number of children with disabilities, marital breakdown, enormous investments in acute hospital health services with a lack of health coverage in the community, supports on a continual and ongoing basis, and an overall failure of society to meet the needs of children with disabilities and their families.

Miriam also shares the enormous anguish parents experience when their child is in pain and when they are separated from their child; importance of devoted and loving caregivers and continuity in the child’s care; unpredictability and difficult emotional ride which parents face when their child has fragile health.

She eloquently states that as parents “We need to be treated respectfully and not expected to cope alone.” The book touches a cord at the depth of sadness that Miriam shares with the readers regarding her distance from Jake. At the end of the book she gives worthy suggestions for parents and advice for professionals.

This is where my comfort with this book comes to an abrupt end. While she accurately represents a number of issues and challenges that families face, she does not typify the values and views of many families who have a child with a disability. Miriam’s journey with Jake left me gravely concerned about the possibility that readers may assume the issues, views and approaches are representative of all families and that individuals who have their own journey yet to make will be negatively influenced.

I found myself fundamentally at odds with Miriam and was disturbed by numerous aspects of the book. Miriam appears to struggle with her acceptance of her child and seems to place an enormous need and importance on the validation and meaning of Jake’s life. She considers the possibility that one should be offered a choice to let one’s child die from the onset and appears to equate palliative care with euthanasia, not comfort and quality of life.

As a mother, I first and foremost valued my daughter Kimberly for who she was, my blonde haired, blue eyed little girl. My approach to my child was the same during her palliative stages as it was throughout her life, that of dignity, celebrating and cherishing her happy days and providing comfort and relief during the painful times.

Miriam places a great deal of emphasis on the importance of the group home called Susie’s Place. This was a place where Miriam felt comfortable that she had found the caregivers that gave her security, stability, safety net and love that she needed for both herself and Jake. However, the message that comes across is that this is the only place that a child like Jake can be cared for and where you can get continuity of care.

The assumption that Miriam makes is that continuity and high quality care cannot happen in the home. “I have wondered, holding Jake all those hours, how I would feel if I were all by myself at home with this fancy equipment around me with only a home care person now and then, a different one each time. I think I would be scared as hell.” If I was a new parent reading this book, the general public or a person responsible for making the decisions about supports, I might question how anyone could handle a child like Jake at home. If these are the feelings of a very strong and articulate woman, might the raising a child with a disability be seen as an almost impossible feat? Having been a mother whose daughter lived at home with all her “fancy equipment”, had the value of in-home continuity and consistency of high quality health care and had my little girl close to me, I know what is possible.

The fact that Miriam may be portrayed by others as a strong advocate on behalf of children with special needs and their parents is disconcerting to me and other families who have made different choices for their children. She may be seen as representing the voice of parents who have a child with a disability. If we have a parent who is seen in that role, who has displayed such a difficult journey to acceptance of her child, who may have chosen the choice of termination at birth if offered, who refers to the birth of Jake as ‘bad luck’ and who sympathizes with the murder of a child

with a disability, how can we expect others in society to understand and value our children with differing abilities?

This book does not address the fact that the emotional, physical and financial stresses experienced by families are the result of society's failure and not because of the child. My fear about this book is that it will be used as a template for parenting and disability. Ultimately, I found that this book diminishes the hope of something better for children with disabilities and their families. ¤ -Janis Douglas Mother/ Staff (CACL)

Introduction

In response to federal and state legislation, "transition plans" are required for all students with disabilities from the age of 14 (16 in some states) on. These plans require that families, students, and school teams consider the student’s post-school plans when developing the goals and objectives of the individualized education plan for the student’s last years of eligibility for special education services. At its best, the plan is a tool for planning not only an inclusive future – characterized by the same choices and opportunities for students with disabilities as for those without – but for realizing a quality inclusive high school education.

In our experience, however, too many transition plans are merely a representation of the “status quo” in special education rather than a means for implementing cutting edge practices that promote full inclusion in school and after graduation.

There are several major problems with the traditional view of "transition" for students with disabilities. First, many high school students with disabilities are not included in the typical school experience -- regular classes, extracurricular activities, and graduation planning. They are not supported to be fully participating and valued members in the typical experiences and classes that can assist them in the development of their future goals. As they progress through their school careers, many students with disabilities spend less time in the school building with their peers and more time in the community. This not only prevents students with disabilities from taking a full schedule of regular education classes, it isolates them from the very peer group they need to be successful in school and as they enter the world of adulthood. It also serves to negate the valuable learning -- academic, life skills, and social -- that occurs for all students in these regular classes and typical high school activities.

Second, the traditional "transition" process tends to perpetuate the notion that "special" paid people are the only ones who can support students in school, at home, in the community, or on the job. Many professionals see "transition" as something that happens to students with disabilities to help them move from special education into the world of adult services. Depending on the community, this can mean transitioning from "school to work" or "school to sheltered work" or "school to day-habilitation" or even "school to waiting list for services."

Third, only students with disabilities "transition" – all other students "graduate". This system itself implies a separation between students with and without disabilities. In an era where the development of a unified system of education that meets the needs of all students has both philosophical and pedagogical merit, it seems counter-productive to maintain a separate system of "transition."

When viewing students with disabilities as fully included members of the whole community, it becomes clear that "transition" must fit into our notion about quality inclusive education for all. To guide the process for supporting students with disabilities throughout their school careers and into adulthood, we ought to be asking questions such as, “What opportunities do we give young people so that they know the range of choices available to them after high school? How do we counsel students to understand their strengths, their gifts, and their needs for support? How do students learn to make good decisions and good choices? How do they select the courses that they'll need to prepare them for life after graduation? What are the opportunities and connections they take advantage of outside of school that will help them be successful after they graduate and move into adulthood?" Efforts must not be targeted at developing a different, special system of high school education and "transition" for students with disabilities, but rather on making the typical educational experience and graduation planning process open and meaningful to all students.

Changing the perspective about high school education and the "transition/graduation" process requires a change in some of the ways that people have traditionally viewed their job roles and responsibilities. A shift from a model of direct professional or paraprofessional support to a model of encouraging and nurturing natural supports in the school and community is essential. School and community members must provide support to students with disabilities in much the same ways that support is provided to others -- employers to new workers, churches and service organizations to new community residents, and so forth. In addition, the hours that school personnel work may need to change in order to support students beyond the school day. Some staff might be assigned to support students from 7 a.m. until noon and others from noon until 8 p.m.

The traditional way of educating students with disabilities was full-time in the school building through elementary school, job shadowing and community-based instruction during middle and high school, development of a job by the age of 20, "transition" compressed into the last few months of school, and finally, a “hand-off” of the student to the adult service system

To accompany and guide a new vision of graduation planning, a new timetable -- a typical educational timetable --

must be embraced. Students without disabilities generally go through the high school grades -- freshman, sophomore, junior, senior -- and then they graduate into the world of adulthood. For many students with disabilities, the timetable has been quite different. A student with disabilities may repeat his/her senior year two or three times in order to "exit" school at age 21 years.

It is essential that students with disabilities (who may be eligible for educational services through the age of 21 years) progress through high school in the same way as planning, a new timetable -- a typical educational timetable -- typical students. Moving through the grades, taking required courses, choosing electives, participating in extra-curricular, and celebrating at the graduation ceremony the end of their high school career upon completion of their (first and only) senior year is important for all students.

State and federal special education regulations state that a student's eligibility for special education services and supports ends upon receipt of a standard high school diploma. For this, and other reasons, many schools have presented students with disabilities with alternative diplomas or certificates of completion (or in the words of one parent, "a certificate of occupancy") in order to continue services through the age of 21 years.

Today, schools and communities that embrace the typical timetable of education for students with disabilities are struggling to match regulations with effective, inclusive education. These schools have acknowledged the need for a compromise until policy catches up with practice. After the formal graduation ceremony (at the conclusion of the senior year), supports must be provided to young adults in jobs, colleges or technical schools, adult education classes, community activities, and so forth. In many of these schools, students with disabilities participate in all of the ceremonies and activities of senior year, including the graduation ceremony, but do not receive their regular diploma until the age of 21 years. While this compromise is not ideal, schools and communities recognize the need to move forward with practice, as one way of changing policy and regulations.

And after graduation? Typical students make a variety of choices. They go to college part-time or full-time, they work part-time or full-time, they live at home or find an apartment with a roommate. Students with disabilities need to have the same choices. School districts must work in close collaboration with the young adult and his/her family, and with employers, college officials, and community organizations to determine what supports will be needed to assist the individual in achieving his/her goals and dreams. Students and families must be supported by the school team to explore options for taking control of the student’s financial resources (including Social Security funds and funds from adult service agencies) to pay for the individualized supports that they need, rather than passively accepting “slots” or “spaces” in programs that do not support their personal goals and support needs.

Does the student have a typical daily schedule - all age appropriate, regular education classes in the neighbourhood school and the supports provided so that he/she can be successful?

Does the student move through the grades in a typical fashion ( 9 - 12) and participate in all grade-related activities?

Does the student use natural environments and people to gain supports (guidance, study halls, lockers, etc.?)

Is the student valued for his participation in school, and do grades, transcript, and diploma reflect this?

Is the student supported to have friends and meaningful relationships in and out of school?

Is the student supported to participate in “community-based instruction” only during times when other students are engaged in such activities (after-school, weekends, summers, after senior year)?

Is the student regarded with respect for his/her gifts and abilities and supported with the highest of expectations?

Does the student graduate from the high school after his/her senior year and continue to receive supports in the community via the school system?

Is the student supported to pursue career, continuing education, housing, and recreation choices after completion of senior year in high school?

I became a parent eleven years ago on the long weekend in May. I had dreams and inspirations about the kind of parent I would be. I had my role models that I hoped to be able to live up to. I nervously took on this new responsibility and opened my heart and my arms to welcome Martha into my life. She was a tiny, beautiful three-and-a-half year old native child. She came into my life and

enriched it beyond my wildest dreams. She was, and still is, “the wind beneath my wings”.

During those first months I cannot tell you how many people told me how “special” I was for caring for Martha. I was always uncomfortable with that praise. I was Martha’s Mom and she was my daughter - end of story. Well, actually just the beginning of the story. And what a story we have to share. Martha opened her heart and arms and welcomed me into her life. She gives me unconditional love and a smile beyond description every day.

I soon began to hate the word “special”. I was “special”. Martha was “special”. Martha has “special” needs. Martha became part of “special” education when she wheeled into school her very first day. Heck - the silly government even labeled one of their programs for families with “special” children, “special” services at home.

When and why did everything in our lives become “special”? The dictionary informs us that “special” means: having some peculiar or distinguishing characteristics; particular; designed for or assigned assigned to a specific purpose; limited or specific in range, aim, or purpose; of, pertaining to, constituting, or designating a species; differential; unique; exceptional; intimate; beloved.........

Only the few underlined are words I would want to use when describing someone I love. I don’t believe people should be subjected to the other definitions.

Nine years ago I became a Mother once again. David brought to our family an incredible sense of humor, a gift to entertain and more happiness to all. Now when people meet me they would use phrases like “very special”. How was I going to make that word go away? I defended my children and myself often. We did not want to be known as “special”. You could refer to us as unique if you like, but not “special”. A speech my friend, Pat Worth, once made helped me come up with a “label” I was comfortable with - my children are “ unique individuals with diverse needs”. I thought I was stating that they were the same as the rest of the world. After all, we are the world. After all, we are

Many people just rolled their eyes at my naiveté. Many people thought I had my head in the clouds. Many people believe that I am “unrealistic”.

My family has expanded again very recently. Sarah joins us this month. It's strange how people are no longer referring to me as “special”. I hear the word “crazy” more often... Does this mean that our family has finally broken down the barrier that labeled us as different and “special”? I doubt it but my Mother always said that there is “No harm in dreaming”. If I had to capture all the wonderful things my children bring to me I would best describe my life as “enriched”. That’s a word I could live with. The dictionary defines enrich as: to make rich or increase the wealth of; to make more productive; to add attractive or desirable elements to; make better, more interesting, etc., by adding. Martha, David and Sarah have made my life richer, more productive, more attractive and desirable, better and unquestionably more interesting.

So the next time you are confronted with that awful word “special” envision your family and yourself as unique, diverse and enriched; not “special” after all.

181 Cowan Blvd. Cambridge, ON N1T 1J8
phone:	(905) 475-7747
Charitable No.:	14099 8840 RT0001
Editor:	Patty Gillis
Email:	pgillis@rogers.com