This year, my boys are getting the gift of Self-Advocacy.

My children, ages 11, 12, and 14,  are growing faster than I can catch up.  More often than not, teachable moments are after-the-fact.  I’m not always right by their sides anymore.  Anju Usman, a doctor who treats children with autism, once told a packed house of parents to make sure, however they helped their child, to do it out of love, not fear.  That’s why my kids are getting tools to advocate for themselves.

Self-advocacy can be tricky.  Autism is a communication disorder for those who have it and those who don’t.  My three boys will be in situations where they might need to give partial or full self-disclosure about their condition.  They will have to know how to be aware of what they need in different environments.  My kids must learn how to communicate those needs effectively and appropriately.

While I’ve been focusing on the healing of issues in their bodies, I had a chance to hear Valerie Paradiz speak at the Autism Society of North Carolina’s Annual Conference.  She’s a mom of a young man with autism and author of Elijah’s Cup.  At the age of 40, Ms. Paradiz also found out that she has Asperger Syndrome.

I listened to this smart, funny woman give her soft-spoken, yet riveting presentation.  I was struck by how comfortable and well-composed she was with talking in front of hundreds of people.  She wove fascinating stories about her family while introducing The Integrated Self-Advocacy ISA Curriculum.  I was hooked.

Published this year, I bought it.  The Curriculum comes in two books.  There’s a Teacher Edition with a forward by Stephen Shore.  A CD of great templates for structured, guided worksheets, and additional helpful tips from Mr. Shore is included.  The Student Workbook is available separately.  User-friendly icons throughout both books help give ideas for modifications or give visual prompts for taking further action on material just learned.  Completion of the program culminates in a Self-Advocacy Portfolio for the individual to keep.

Although specifically designed for middle-school students on up to adults who have high-functioning autism, Asperger Syndrome, and other related conditions, many units are adaptable for younger students or persons with limited or no verbal communication skills.  In fact, Ms. Paradiz developed her pilot program with students in a self-contained special education classroom; many are nonverbal and cognitively challenged.  The students were taught to do what she calls “Scans” for sensory and social details in any environment.

This book supplies a firm foundation for understanding the meaning of self-advocacy and disclosure.  As a bonus, Paradiz addresses sensory needs, teaches social skills, and encourages the learner to explore his or her “deep and focused interests”.  Valerie Paradiz beckons and guides new self-advocates to keep moving forward by nurturing their own interests, assessing possible career options based on those interests, and researching educational requirements for careers.  She empowers people to make their own plans for their own lives.

I had the pleasure of an email interview with Valerie Paradiz while she was in Paris on her way to London:

In hindsight with regards to raising your son and finding out you were also on the autism spectrum, what did you do right?  What do you wish you would have done differently?

The hindsight I gained after my diagnosis is that every individual on the spectrum deals with the diagnosis and the areas of self acceptance and self advocacy as individuals.  As much as I felt I was tuned into the basic principles of self determination as Elijah’s mom, once the diagnosis applied to me and my life, my relationships, my contribution as a worker in our culture, I saw how unique my own path had been and how it was really up to me to chart that path forward.  Looking back on parenting Elijah, I’m not sure that I’d want to change anything.  I suppose the only thing I wish could be different would be to have more time and more financial means to support him.  In that, I guess I share the same experience with many parents:  we’re not perfect and yet the wish to do more and better for our children never goes away.  In that way, we’re always learning.

What specific experiences prompted you to create The Integrated Self-Advocacy ISA Curriculum?

Various experiences prompted me to write the ISA curriculum.  Most recently, being denied employment for a position I was well qualified for because I self disclosed during the interview process was the impetus for writing the unit on the Americans with Disabilities Act.  It was illegal for the agency to act in this way and it wasn’t required of me to disclose the diagnosis at the interview.  Knowing these basic skills and information might help other aspies circumvent such unfortunate things.  Secondly, my friends and mentors on the spectrum inspired me, many of them pioneers in the disability self-advocacy community.  Finally, I feel that we all talk about self-advocacy, person-centered planning, and self-determination as good things, but we have yet to translate these ideals into practice.  I wanted to give this curriculum to teachers, parents, therapists, and others who want to support someone on the spectrum in this way but don’t know where to begin.

How do you stay calm and alert in public-speaking situations?

In order to stay calm and alert in public speaking situations, I must do a great deal of physical exercise, eat an organic and low toxin diet (as much as this is possible), take key supplements for GI issues and insomnia, and have limited social interaction until I’m on the job.

Valerie’s last answer sounds similar to what we’re doing with our kids!  I think you can tell The Integrated Self-Advocacy ISA Curriculum has my thumbs up.  It is the most thorough, comprehensive, integrative plan I could wish for to help my children prepare for their transition to adulthood.  And, as I’m a pretty frugal mom, ISA provides the most bang for your buck.  I encourage you to buy it from the Autism Society of North Carolina Bookstore.  A portion of the sale goes directly to helping individuals and families affected by autism in North Carolina.  Thank you, Valerie.  And thank YOU, Readers.

MEMORANDO

La Directiva Nacional 2009-2010 inició sus esfuerzos respecto al proyecto H.R. 2499 (en adelante “PR Democracy Act”) a mediados de mayo de 2009.[1] PRSSA conocía del proyecto desde la redacción de su primer borrador, y anticipaba la participación de la membresía en general en cuanto el proyecto se hiciera público. La página Web www.hr2499.com se creó pocos días después de que el proyecto fuera presentado ante la Cámara de Representantes federal el 19 de mayo. A continuación, un desglose de los esfuerzos subsiguientes:

«  La página Web www.hr2499.com se creó con miras a brindar apoyo de base al PR Democracy Act. Las herramientas en la página proveyeron a la membresía de PRSSA la información necesaria para involucrarse en la formación de opinión pública respecto al proyecto. En más de una ocasión, noticias sobre el proyecto iban de la mano con lo que PRSSA dictaba en su página y en sus comunicados de prensa. Esta presencia mediática por parte de un proyecto y una organización estudiantil es sin precedentes.

«  Los esfuerzos de PRSSA en la Web fueron paralelos a lo que ya era una presencia establecida y oficial por parte de su entonces Director Ejecutivo y Presidente-electo, Raúl Vidal, en los esfuerzos de cabildeo del PR Democracy Act. Los protagonistas de los esfuerzos a nivel federal, en particular el Puerto Rico Federal Affairs Administration (PRFAA), ya colaboraban activamente con PRSSA. La creación de www.hr2499.com expandió la presencia de PRSSA y la cementó al convertirse en la referencia primordial de oficinas de congresistas interesadas en la medida.

«  PRSSA tuvo un rol significativo en la suma de varios co-auspiciadores al PR Democracy Act durante el verano. En esta campaña preliminar a la vista en el Comité de Recursos Naturales se sumaron 113 co-auspiciadores a la medida.[2]

«  PRSSA transmitió en vivo las vistas del Comité de Recursos Naturales respecto a la medida, donde testificaron líderes partidistas de Puerto Rico. También se transmitió el “mark-up” de la medida, donde se aprobaron enmiendas favorables a la medida y se rechazaron enmiendas dirigidas a derrotar la medida.

«  Luego de su aprobación en el Comité de Recursos Naturales[3], PRSSA continuó colaborando con el cabildeo de la medida hasta alcanzar los 173 co-auspiciadores.

«  Probablemente el protagonismo más marcado de la Organización en la suma de co-auspiciadores fue durante lo que llamamos el “final push” antes de ser referido al pleno de la Cámara. En este periodo, PRSSA estuvo profundamente involucrado en la suma de los últimos 12 congresistas en abiertamente apoyar el proyecto.

«  El proyecto actualmente cuenta con 185 co-auspiciadores[4] y espera votación en el pleno en el Union Calendar. La expectativa es que se aprobará cómodamente en las primeras semanas de diciembre.

«  En mayo, PRSSA ya había iniciado esfuerzos para asegurar la aprobación de la medida en el Senado federal.[5] Estos esfuerzos continúan y constituyen la principal misión de PRSSA en la capital.

Cordialmente,

Raúl R. Vidal                                             Eduardo J. Soto                                        William-José Vélez

Presidente                                               Director Ejecutivo                               Vicepresidente

ANEJOS—

PUERTO RICO STATEHOOD

STUDENTS ASSOCIATION

www.statehoodpr.org

COMUNICADO

Lunes, 25 de mayo de 2009

Contacto: Eduardo J. Soto (787) 536-3014

PÁGINA WEB PONE APOYO A H.R. 2499 AL

ALCANCE DE TODOS

SAN JUAN, PR: El Puerto Rico Statehood Students Association, Inc. (PRSSA) creó la página web www.hr2499.com para orientar sobre el proyecto HR 2499 del comisionado residente Pedro Pierluisi que provee para una serie de plebiscitos avalados por el Congreso que podrían definir finalmente el status jurídico de preferencia del pueblo de Puerto Rico. La página provee información sobre el proyecto (incluyendo el texto de éste), medios para contactar a congresistas y solicitar su apoyo a la medida, los informes del Task Force y Equipo Inter-agencial de la Casa Blanca respecto al status de Puerto Rico, entre otras funciones.

La página es una manera de abrir los esfuerzos de PRSSA al público en general. Entre la información provista por la página, se encuentran los 93 (sujeto a cambios) co-auspiciadores con los que cuenta la medida hasta ahora. La información de contacto de posibles co-auspiciadores está disponible para que el público en general pueda llamar y solicitar apoyo. Enlaces externos a páginas observadoras del proceso legislativo federal le proveen a los usuarios orientación respecto a los pasos que la medida irá tomando antes y después del voto en el pleno de la Cámara.

“Es hora de llevar la campaña en el Congreso a manos del pueblo” expresó José Cabrera, Presidente de PRSSA, al anunciar la creación de la página web. “No queremos que sobre espacio para duda de que la mayoría abrumadora de los puertorriqueños desean expresarse democráticamente en torno a su preferencia de status.”

“No podemos permitir que intereses partidistas obstruyan esta consulta” añadió Raúl Vidal, Director Ejecutivo y Presidente-electo. “Nadie debería temer a un plebiscito justo y balanceado como el propuesto por el Comisionado Residente.”

PRSSA es una organización sin fines de lucro dedicada a la instrucción en el tema de status y la promoción de participación estudiantil en el proceso democrático.

# # #

[Memorando, 6 de junio de 2009]

Dear Member,

It fills me with immense honor to be the 6^th President of this, our Puerto Rico Statehood Students Association.  Thank you for your vote of confidence and continued support. This involvement is crucial to making our desired goal of statehood inevitable.

Since its inception, the PRSSA has only victories to account for. Some of our most recent achievements constitute the inscription of thousands of citizens to vote, regularly and absentee. It is the PRSSA that enriches over 45 campuses across the US with the message of statehood. It is this, your organization that has been requested to lead the grass-roots push to see the fair and impartial HR 2499 bill passed in our US Congress, which will finally assure the right of the people to vote on its future status.

In all our achievements, we have been humble, but none of our achievements are humble. This is demonstrated by our continued success in achieving the vital steps toward our ultimate equality in the form of statehood. The people of Puerto Rico have noticed us; our present government respects and honors us; our foes fear us; and in Congress, we are lauded for our representation of the facts – so much so, that the PRSSA has been essential in gathering the now 113 votes that HR2499 now has.

I leave you now with our accomplishments, but with the certainty that you will now act on behalf of your own future and ideal. As a member of the PRSSA I ask you to be more involved in our struggle. Start by looking at our new website: www.hr2499.com, the most respected website on the Puerto Rico Democracy Act of 2009; it is the most widely read by staffers and members of Congress. Through www.hr2499.com you will inform yourself of Resident Commissioner Pierluisi’s bill to solve our centennial status problem, and it allows you to ACT. It gives you the tools to call several key Congressmen, or to email them. Send it to others, so they may too take part in our struggle.

I thank you for all your achievements, but more than that, for what you are about to achieve.

Humbly yours,

Raul R. Vidal

President PRSSA

PUERTO RICO STATEHOOD STUDENTS ASSOCIATION

www.statehoodpr.org

www.hr2499.com

(787) 649-5111

July 23, 2009

Hon. Paul C. Broun, M.D.

U.S. Congressman

Dear Cong. Broun,

It was a pleasure seeing you take an active part in yesterday’s markup on HR 2499. Even though we disagree on certain aspects of the issue, it is gratifying to see a lively debate on a matter that has been present to the US citizens of Puerto Rico for 92 years. It is through lively debates that misinformation is corrected by facts, and just decisions may be taken.

Through yesterday’s markup, it became evident that you may have been mislead by inaccurate information. I would like to take this opportunity to respectfully correct some of your statements, and thus alleviate many of the concerns demonstrated in the Committee on Natural Resources.

In one of your statements, you mentioned that the current public opinion was divided between 40% for status quo, 20% for statehood, 20% for independence, and the rest as undecided. This is severely inaccurate. The most recent plebiscite demonstrated a 46% support for statehood, however, that was over 10 years ago. Recent polls have estimated support for statehood raging from 51 to 54%. You can understand why your comment evoked some emotion.

Throughout the hearing, there was great concern that Puerto Rico should apply English as an official language as a requirement for statehood. However, since 1993, English has been an official language in Puerto Rico. Furthermore, the general population speaks and understands the language without compunction. Millions of Puerto Ricans live among the rest of the US population, communicating freely, living normal lives. Thousands others serve in the armed forces with distinction and without qualms concerning language. It is important, nonetheless, to recognize that what binds all Americans in this great Union is not language, but Life, Liberty, and the Pursuit of Happiness.

You also questioned the legitimacy of HR 2499 by labeling it as “undemocratic.” However, why should a “simple majority” be considered undemocratic? The entire electoral system of the US is based on that principle. This notwithstanding, the entire history of the US is marked by annexation of territories without the voting consent of the people, little alone a super majority. Both Hawaii and Alaska were annexed into the Union before plebiscites were held. Most other states were annexed through treaties or Congressional legislation – so under your own logic, HR 2499 is much more democratic that the processes adopted in the past.

HR 2499 is exceptionally inclusive – taking into account every single political option present in Puerto Rico. In determining the fairness of any political process inside the US, one always looks to the will of the people. The overwhelming majority of the people in Puerto Rico wish to see a definite change in the present status – HR 2499 affords them this right.

I am confident that once you are fully informed of the facts surrounding this issue, your opinion of HR 2499 will change. The Puerto Rico Statehood Students Association and I invite you to visit Puerto Rico, so you may meet your fellow US citizens and better appreciate our situation. My organization is also more than willing to continue supplying facts supported by evidence regarding this issue.

Once again, thank you for your interest and involvement. I hope it continues, and when the facts are established, that you may join us in our effort to improve democracy at home.

Best regards,

Raul R. Vidal

President

Puerto Rico Statehood Students Association

PUERTO RICO STATEHOOD

STUDENTS ASSOCIATION

www.statehoodpr.org

COMUNICADO DE PRENSA

Viernes, 15 de mayo de 2009

Contacto: Eduardo J. Soto (787) 536-3014

SENADOR LIEBERMAN PROMOVERÍA LIBRE

DETERMINACIÓN DE PUERTO RICO

WASHINGTON, DC: El Puerto Rico Statehood Students Association, Inc. convocó una reunión entre el gobernador Luis Fortuño, el comisionado residente Pedro Pierluisi y el senador por el estado de Connecticut Joseph Lieberman, en la que se discutió el apoyo del veterano senador del caucus demócrata al Puerto Rico Democracy Act 2009 que será radicado por Pierluisi prontamente.

En una cena junto al Director Ejecutivo de PRSSA, Raúl Vidal, el senador Lieberman expresó su apoyo a la medida y a la libre determinación mediante referéndum. La medida debe aprobarse en la Cámara de Representantes para luego ser auspiciada en el Senado, motivo por el cual el comisionado residente y el Gobernador solicitaron ayuda de PRSSA en su esfuerzo para crear alianzas en la cámara alta.

“Es de suma importancia que la medida tenga apoyo en ambas cámaras para agilizar su aprobación” – expresó Raúl Vidal, Director Ejecutivo de PRSSA y su representante en la reunión. “Contar con el apoyo del senador Lieberman es evidencia de que la condición colonial en Puerto Rico llegará a su fin en este Congreso o el próximo.”

El proyecto que radicará Pierluisi provee para un plebiscito federal dividido en fases que inicia al consultar al pueblo de Puerto Rico si apoya la permanencia de la actual condición territorial o sí desea optar por una opción no-territorial, en cuyo caso se efectuaría un segundo plebiscito con opciones no-territoriales.

PRSSA es una organización sin fines de lucro dedicada a la instrucción en el tema de status y la

promoción de participación estudiantil en el proceso democrático.

# # #

RAÚL VIDAL
PRESIDENT
BEFORE THE COMMITTEE ON NATURAL RESOURCES
UNITED STATES HOUSE OF REPRESENTATIVES
HEARING ON H.R. 2499, THE “PUERTO RICO DEMOCRACY ACT OF 2009

JUNE 24, 2009

Chairman Rahall and esteemed members of Congress,

My name is Raúl Vidal, President of the Puerto Rico Statehood Students Association (“PRSSA”), a non-profit student group dedicated to researching and informing youth on Puerto Rico’s status issue, as well as improving student involvement in the democratic process.

For over 110 years, Puerto Rico has been a territory of the United States.  For 92 of those years, we have been U.S. Citizens, honorably fighting in every war in defense of our nation’s democracy. Also, as citizens, we have contributed to the arts, sciences, sports, economy, and education. In these contributions, no demographic has been more important than students. Likewise, on the issue of status, no demographic has more to win, or lose, than the students. They, we, are the future public officials, entrepreneurs, and innovators entrusted with the protection and progress of our country.

In the face of such a complex issue, the PRSSA was created in 1979 as a forum for students in Puerto Rico and the continental U.S. to learn about Puerto Rico’s political situation, its territorial condition, relevant jurisprudence, and the framework for admission to the U.S. as a State. The PRSSA also serves as an engine of change; a tool in the search for student involvement in matters that will affect their lives. Across 45 campuses nationwide, students have come together in support of Puerto Rico’s right to self-determination and statehood. We have supported The Puerto Rico Democracy Act of 2009 since its introduction in the House, rallying support for Puerto Rico’s self-determination. Support for H.R. 2499 has echoed from San Juan to the District of Columbia, and across the 50 states. PRSSA’s members have campaigned for this bill across the blogosphere, on our website: www.hr2499.com, through the halls and offices on Capitol Hill, to campuses across the U.S., and in the homes of the residents of Puerto Rico.

The uncertainty of our complex political status continues to have an immense impact on the people of Puerto Rico, and a bloc that bears the full brunt of that negative impact is the student bloc. Under our present political status, the US citizens of Puerto Rico do not enjoy the same federal benefits that the rest of the citizenry enjoys inside the Union. Such inequality causes deep economic restraints for Puerto Rico, causing a brain drain in which many students leave the island in search of equal treatment. It is mostly students that serve in the ranks of our armed forces, but the US citizens of Puerto Rico do not have the right to a seat on the table when determining the fate of these soldiers, or that of our country. Our student veterans also have trouble receiving equal benefits than those in the continental U.S. in pursuing their college degree.

No U.S.citizen should have to leave his or her home inside the US to have the same rights as all other citizens.

Even if students choose to leave Puerto Rico, and seek a home elsewhere, they carry with them some of the impediments of our political status. While every other American student is taught that one day they may become President of the United States, the American students born in Puerto Rico can never aspire to such a position.

The Puerto Rico Democracy Act of 2009 has the power and foresight to resolve the uncertainties that Puerto Rican students face as to their present, and more importantly, their future. Cong. Pierluisi’s bill would effectively give us students the right to vote on our own future. I venture to say that this empowerment is no less different from when a student chooses to study a career to determine his or her future service to our society. We want to determine our future roles as citizens of this great country. The Puerto Rico Democracy Act of 2009 grants the youth a chance to voice said preference.

This bill includes every single alternative to Puerto Rico’s political status that is neither territorial nor transitory. The options provided in this bill are representative of every party platform in Puerto Rico, always in accordance with U.S. public policy and in agreement with the Democratic and Republican party platforms regarding this issue.

Opponents of this bill have argued that there is no consensus. They base their findings on the refusal from the leadership of two political parties. However, we believe that beyond consensus, there is an outcry from the people of Puerto Rico – who will ultimately be the beneficiaries of the empowerment of this bill. The most recent poll on whether the people wished to change their political status reflected that an overwhelming majority (74%) of the population wished to see that change. This is real consensus.

Nothing is fairer, or more just, than a democratic process by which the people choose their own fate. This is what we, as students, have always been taught – and like all other members of Puerto Rico’s society, we are eager to take part in that process to put an end to our uncertainty.

Consonant with the policy of Republicans, Democrats[6], and the democratic wish of the 4 million US citizens of Puerto Rico, we express support for this fair and impartial bill to address a self-determination protocol for Puerto Rico through first-ever federally sanctioned referenda. We hope you will agree that consulting the People of Puerto Rico is fair as a first step in this process, and invite you to join us in improving democracy at home.

Thank you,

Raúl Vidal

President

Puerto Rico Statehood Students Association, Inc.

Eduardo Soto

Executive Director

Puerto Rico Statehood Students Association Inc.

[2] Ver Anejo 2: Memorando interno del 6 de junio de 2009

[3] En vistas respecto al PR Democracy Act, PRSSA también hizo noticia con su invitación al Cong. Broun, un detractor a la medida influenciado por cabilderos populares, a visitar la Isla y conocer la realidad del debate de status. Ver Anejo 3: Reacción a expresiones del Rep. Broun de Georgia.

[4] El Library of Congress refleja sólo 181 dada la suma a “última hora” de varios congresistas. Estos votos se reflejarán en la mayoría que aprobará el proyecto en el pleno.

[5] Ver Anejo 4, Comunicado Senador Lieberman y H.R. 2499.

[6] Text of Republican and Democratic Party platforms regarding Puerto Rico’s status definition are available at www.hr2499.com.

Discussion is picking up on the topic of new framework legislation for education in Alberta.

The first question is not about education:  it is about community.

For more than 125 years Albertans have lived in levels of community — the neighbourhood or village or town; the city or county or M.D.; the province; the country.  In the province, we have governed ourselves — we have practiced self-government — simultaneously in the local community and in the provincial community.  For many many years I knew this as the “respectful partnership” that existed between the government of the provincial community and the government of the local community.

The purpose of these two levels of community, the purpose of this respectful partnership is not to make work for elected politicians.  The purpose is to allow citizens to make some important decisions among a smaller population and across a smaller geographic area, while making other important decisions among a larger population and across a larger geographic area.

In a democracy, “government” is shorthand for “self-government“, and self-government means “self-determination“.  The community that can make some decisions for itself, even if the decisions lead to mistakes, and use its resources to act on its decisions, is self-determining, that is, self-governing.

The term “respectful partnership” (between the provincial government and the local government) has fallen into disuse, because the working relationship is no longer a partnership:  it is the relationship of supplicant to provider.  (Some observers would also say that the relationship is no longer respectful.)  Across all Ministries, the provincial government is centralizing more and more decision-making.  Every such movement reduces the number and significance of the locally made decisions.  In addition, the provincial government is more and more in control of the purse-strings.  So, the local community has to go to the provincial government to ask for permission and resources to do what people themselves — in the local community — want to do.  Locally, there is less self-determination and less self-government.  As this happens, the local community itself is weakened.

From the perspective of the provincial government, none of this is “anti-community”, or undermining self-government and self-determination.  From the perspective of the provincial government, the provincial community — all 3.6 million of us — is the only community that counts.  It is not as though they favour large communities, and have a bias against small communities.  The mayor and Council of Calgary feel just as shackled as the mayor and Council of Claresholm.

And, indeed, the provincial government may be right that local communities should no longer be self-governing and self-determining.  Perhaps with developments in transportation and communications technology we are all one community for all purposes.  Perhaps we can be self-determining and self-governing exclusively through the voices and votes of 83 men and women in the Legislative Assembly of Alberta.  Perhaps there are no local priorities in Provost that differ in any significant way from the priorities of Peace River.  Perhaps there are no conventions that are more central to life in Coaldale than in Calgary.   Perhaps the people of Edson have exactly the same vision of the future of community — and how to achieve the vision –as do the people of Edmonton.

Personally, I still hold — and strongly — that many decisions should be made in the local community, by the people who live in it.  There are some decisions about which I want to be in community with my neighbours, the people I share immediate space with.  There are some decisions about which I want to be in community with all Albertans.  (There are some decisions about which I want to be in community with all Canadians.)

There is another reason why I believe it is important to favour substantial self-determination and self-government for local communities.  In times of rapid change, turmoil, and uncertain outcomes, the best decision-making model is a decentralized one.  Some decisions may be badly made or implemented.  Some will be well-made and implemented.  The more independent decision-making in play, the more likely it is that decisions appropriate to the circumstances will succeed and thrive.  Bascially, in times of rapid change, turmoil, and uncertain outcomes, one only wants decision-making to be highly centralized if one is 100% certain that 100% of the decisions will be 100% correct 100% of the time.  No provincial government has that track record.  You can decide how close the Government of Alberta comes to approximating that record.  (Think of health care, Bill #44, etc.)

In any case, we the people have the opportunity to consider this issue again, in the context of new framework legislation for education in the province.  Do we want the government of Alberta to acknowledge, in legislation, that local communities must continue to be self-governing, or should we start to think of school boards as representing a local public which is simply one stakeholder group among many?  Do we want local communities to continue practicing self-determination, or do we want all local communities in the province to be equal supplicants to the provincial government? When the elected representatives of local communities make decisions, should they be accountable to the local electorate, or should they be accountable to the provincial government?

All of these issues, and more, are up in the air right now.  In the year ahead, the way we deal with local self-government for schools will determine the future of local communities generally and across the province.  This will determine the future of municipal government and it will determine the future of economic and social well-being for all of us, for years to come.

Is Alberta a community of many communities, or is it one single community of 3.6 million people?  Are all political decisions to be made in the Legislative Assembly of Alberta, or are there political decisions that should be made in smaller communities?  Would we be wise to have all political decisions made in the Legislative Assembly, or should some decision-making be decentralized?

Now is the time for citizens to think about self-determination, self-government, and community.  Now is the time to talk among ourselves, listen to our neighbours, inform ourselves, form a conviction, and talk to our elected representatives — school trustees and M.L.A.s

On behalf of Directors Ernie, Susan, Millie and Aaron, and our volunteer Board of Directors: we wish you all good things during the holiday season and throughout the rest of the year.   To all our team members, thanks for going the extra mile so often – we’re amazed at all people do, that we often only hear about afterwards.   To the folks that we support, our gratitude for letting us be part of your lives and enabling us to have careers in which we’re surrounded by success stories.   To the families of you all, we really appreciate all the support you give us, and your trust, and your faith: thank you.   To the communities that we’re part of – we’re thankful to be part of your neighbourhoods and lives.   To our funders, our thanks for allowing us to be part of your decision-making teams and, over the last few years, trusting us with new work that we’ve found exciting and enriching. 

Christmas is, of course, December 25th, but you might also like to know that Hannukah begins on December 11th this year and lasts for 8 days.   World Aids Day is December 1st and there are activities around the city.

We’d love to see you at our annual New Year’s Tea at Van Dusen Gardens (this year we have an Olympics Wii theme!), first Sunday of the New Year, January 3rd, Van Dusen Floral Hall.   Refreshments will be served.   For more information call the office at 604-323-1433.  

You can subscribe to the newsletter on our website www.spectrumsociety.org or see it as a blog at http://sscl.wordpress.com/  Click on any heading to read the full article.  Feel free to forward this to those you think might be interested.   Our other e-publication is also a monthly newsletter that documents our work with Personal Support Networks around the province.   You can access this at http://101friends.wordpress.com and you can find out more about our project at our site www.101friends.ca   You can also subscribe to our 101friends newsletter from this site.

Wishing you a peaceful and joy-filled 2010, surrounded by networks of people who care about each other, who care about you.

The Provincial Government has continued to break it’s commitments to stable and long-term supports for people with disabilities by passing legislation this month that changes the requirements for board membership of Community Living BC.  Until this month, the legislation required that the Board have a majority of members who are individuals who have a significant connection to community living such as family members and persons with developmental disabilities.  This requirement has now been removed with little explanation from government.

In the Vancouver Sun on Friday, November 27th, Tim Stainton wrote an excellent opinion piece that provides a good historical overview of the development of Community Living BC.

Spectrum is a member of the BC Association for Community Living (BCACL) and supports their call, in their press release, for the provincial government to respect the foundations of Community Living BC and reverse their decision on CLBC’s board membership.

This latest restructuring of CLBC comes following the announcement in June 2008 that children with Special Needs will no longer be served by CLBC.  These services would be provided by the Ministry of Children and Family Development, a transition which was just completed on October 31st, 2009.  In July 2008, the Government announced a change in the regulations around eligibility that restricts CLBC to providing services to people with an IQ of 70 or less.  CLBC is developing a new program for people who do not fit this eligibility criteria, but the details have not been released yet.

I recently had the privilege of attending a training on Optimal Individual Service Design taught by Michael Kendrick and Janet Klees. Optimal Individual Service Design is based on the idea that everybody has needs, and that a life will be fulfilled to the extent that those needs are met. Needs for any given person are based on the culturally valued analog, or what the typical person for a given age would need to live a good life.

The course itself had two parts; the first being a learning component, and the second being a practical component. During the day we would spend our time receiving information about person-centredness, right relationship, social role valorization, and service quality, just to name a few of the topics. For the practical component course participants were put into groups of three and matched to an individual receiving services in the Vernon area.

Within our groups of three we would meet up with our assigned individual and get to know them as best we could. We also had opportunities to interview their families, friends, and the people they received support from. The first week we were told to focus on gathering information, and then we applied that information to the normative needs for a person of the same age. We were given a list of 20 domains of need, ranging from health, to home, growth, to relationships, and so on. By the end of the first week we had a wealth of information on the individual and a pretty good picture of what they might need to live a good life.

The second week continued where the first left off. We continued to learn about issues related to bureaucracy, empowerment, and innovation, as well as many others. Our groups continued to meet with our assigned individual and those around them, and we continued to gather a wealth of information. We were instructed to begin focusing on what might meet the needs of the individual, how the what might be accomplished, and what would be the identity of the person helping to implement the how. We asked these questions for each of the 20 domains, and were left with an even clearer picture of what the ideal life for this person could look like.

After this was completed we were asked to focus on the major vulnerabilities that the individual might face, and what were the safeguards that could be put into place to help the person alleviate the potential downfalls. We were then asked to take the gist of our proposal and write a summary to hand off to the families and service providers. Once this was done the whole process was out of our hands and it became up to the families and service providers to implement them as they see fit.

Throughout the course we were encouraged to “imagine better”, to think of a life for someone that is not defined by disability or the services they receive, but by their abilities, and by a life outside of the service world. We were asked to think of a life for the individual which would make us jealous, one that would exceed all expectations. Then we focused on how that life could be accomplished with the individual. A person could have their own home, their own vehicle, a multitude of valued social roles, and enough natural supports that they don’t need the typical 9-4 support. They can choose who they want in their lives, who they receive support from, and they can drive their own services in a way where the agency operates at arms length.

This process continually challenged my assumptions about what is possible for individuals, because we had to continually re imagine what a person could achieve. I learned that there is a lot of fear around the expansion of people’s lives, often related to issues of funding, and to how the improvements might be accomplished. I also learned that there is a lot of hope. Hope that things can get better for individuals that receive support. It was so amazing to sit down with individuals and their families to talk about what they wanted in their life, and how that could be used to help them make their lives as fulfilling as possible.

Chad Clippingdale

Any questions?

cclippin@sfu.ca

It always amazes me how the busiest people always find a moment to add one more detail to their day.  That would be true of our newest member to the office team ~ Sterling James.     Sterling is heading up the re-configuration of our day program services.  Welcome Sterling!!

1.      Who do you work with?
As of October of this year I work with all of the community inclusion day service folks.  A.k.a. the bridges in and bridges out crowd and that list is long.

I continue to hang out with OH the odd time to catch up and have a few laughs.

2.  What is your favorite thing about your job?
Wow where to start.  That I get to share my life with some incredible people and
how many places let you wear kilts to work and fake tattoo arm sleeves.

3.      What’s your favorite thing about Spectrum?
The first thing that comes to mind is the freedom for everyone to be who they are. That Spectrum celebrates the stories of each and every individual.  I have seen the other side of the coin, the darker institution side where the individual wasn’t seen for who they were and made to conform (in many cases not in a good way) to a group mentality and stripped of self.  Where groups of people sat and made decisions for folks and didn’t ask their opinion or dreams or wishes.  That is why I left this line of work and traveled a much different career path.

4.  What other kinds of jobs have you had before?
There have been a few……

My first job was in retail in my parent’s variety store in Orillia, McLean’s Variety. I was 11.  When they put in a restaurant, I became the short order cook on Saturday’s that was about age 15.  I have pumped gas, delivered pizzas and newspapers.

I was at the helm of three different catering companies in London, ON. Have catered to three Ontario premiers, and catered an event that Prime Minister Chrétien.  At one event the wife of Premier Peterson wanted me to talk her husband into getting his ear pierced.  I spent some time talking about crème fraiche with Governor General Adrienne Clarkson.

I have worked as a Special Events chef; a Chef de Partie Garde Manger and the Principle Culinary Instructor and Principle for the Culinary School of London (ON).

I was an extra on the L-word.  I was even a Santa Claus for dogs and puppies at a local dog boutique here in Vancouver.

4.      Tell us a bit about your life?
It started 55 years ago almost to the month on a wintry day in middle Ontario ……….. Okay I won’t bore you.

My philosophy of life has always been about learning new things, exploring new areas and trying new things.

I moved to Vancouver almost 4 years ago and truly feel I have found a city that I call home.  When asked why I was moving west, I would tell people that I left my soul in Vancouver 20 years ago when I first visited and that it was time to reconnect my body and soul.  I do that spiritually every time I stand on the beach at English Bay.

I am a surrogate dad. I co-wrote, produced and acting in a short film based on this fact. My character tells his new born son how he was conceived by a gay man and a gay woman. It was well received and traveled around the world for a couple of years in various festivals. I was even considered as writer of the year at the Out on Screen festival here in Vancouver in 2006.

I believe in giving back to the gay community so I volunteer at Qmmunity and sit on the programming committee for Out on Screen Vancouver’s Queer Film Festival.

5.  What are your goals?
My goals for my life are and have been to find a true balance between the work I enjoy and my personal life.

My goal within Spectrum is to help us move towards true inclusion within the community.

6 .      If I could change one thing….
I would make every one more understanding of each other.

Thanks to Shirlane Colban for this wonderful Santa-Frog! www.shirlanecolban.com

Hello friends!   I’ve just come back from walking the dog around the neighbourhood and already people have got their holiday lights twinkling and some of them have Christmas trees in the window – and, as I write this, it’s not even December yet!   Eek!

Different folks have different holiday traditions and all of them are important to us and to the networks of support; they are ways to bring us together, again and again, year after year, and deepen our connectedness by repeated experiences of something that is the same and yet, because we are always changing, different.   Last week we went to a “whimsical gift exchange” that, although it’s only a couple of years old, we’ve come to look forward to.   People bring things that they no longer want (you’re told not to buy anything for the purpose), wrapped up nicely, and we take turns choosing  a mystery gift and unwrapping it.   People getting gifts later in the game can go around and take someone else’s gift up to three times.   If someone takes your gift, you can choose a new one.    You might end up with Joanne’s baking (amazing) or this very odd set of picnic plate holders that turned up last year and then came back again this year like a bad penny.   What fun!   If we’re lucky those picnic plate holders will turn up again. 

In a couple of weeks we’ll be attending the Universal Gospel Choir, which is a tradition for many folks I know, but which I have yet to make it to.   Two of the most interesting and insightful people I know, Chris Horrocks and Avril Orloff, sing in the choir…   so not only are they amazing people to work with in any sense, but they apparently sing.   Wonderfully.   We are all layers and layers of interests and passions and it takes years to uncover all the bits…   This year thanks to a great friend we have tickets and are going as a small gang of new and old friends.   The thing that will probably happen there is that, given it’s at the Jewish Community Centre, they’ll light the menorah.    Since we were married, our family has done this every year and I’ve come to love the 8 days of Hanukah candles, each evening at dusk, the room getting brighter and brighter and my partner telling stories about the Macabees…    He and our son just got back from Connecticut where they celebrated a second (American) thanksgiving.   Some years, when they don’t go, we host a second Thanksgiving at our house for our American friends and anyone who likes turkey!   (Turkey is the reason I can’t be a vegetarian!)   Our friend Judy, known to many of you, has taught us all to barbecue turkey and it doesn’t matter how cold it is or how snowy many folks from our agency now spend their holidays outside basting and poking around over the barbecue!   Our family’s variation of this is “Jerk Turkey,” sort of  a Caribbean version of the holidays.  

So, there’s a lot more going on at this time of the year, as we traditionally have more time to spend together and more need to rely on each other, than merely shopping.   For many of us shopping is the least of it.   What’s a holiday tradition at your home or in your family?   We’d love to hear from you.  

On another note, check out www.bcacl.org for information on the recent changes to the makeup of the board of CLBC and information on how to make your views about these changes known to government.    We’ve had some amazing meetings with groups of self-advocates and got to hear lots about how people are directing their own lives and resources and making great inroads into taking their place in their communities.    Our own letter expressing our belief that folks with disabilities and their families have the capacity to give valid and thoughtful input into the direction of their services will be sent out today.  

From Susan and Aaron, and from everyone affiliated with our 101 Friends Personal Support Network project, we wish you all good things in the coming year and many, many connections with friends new and old. 

Feel free to forward this to friends or others who might be interested.   You can subscribe to the newsletter on our website www.spectrumsociety.org or see it as a blog at http://101friends.wordpress.com/  Click on any heading to read the full article.  Feel free to forward this to those you think might be interested.   Our other e-publication is also a monthly newsletter that documents the work of our agency, Spectrum Society.   You can find out more about our Personal Support Networks project, including our publications, at our site www.101friends.ca   You can also subscribe to our 101friends newsletter from this site.  If for some reason you’ve decided you don’t want to receive these newsletters, unsubscribe at the bottom of the email you were sent.   To subscribe to our agency’s newsletter, Spectrum Society In The Community, go to our main website and click on subscribe in the top right corner: you will have a choice of subscribing to this newsletter or the agency one.

“We were born to unite with our fellow men, and to join in community with the human race.” Cicero

We had a great time at the 10th Annual Self Advocacy Leadership Institute at Edenvale, making some new friends and enjoying visiting with some old friends and some folks who we have met over our travels during the last couple of years.    One of the things that folks told us there is how much they look forward to coming each year and seeing people they’ve met, learning new skills, sharing information and ideas and growing stronger.   For only $170 per person for the weekend, inclusive, what a great deal!    Way to go, SelfAdvocateNet.com, Gregg, Arlene and Cam and whoever else is involved in putting all of this together!  

Each of our workshops is different, depending on who is there.   In this one we were delighted to have some folks who had attended workshops we had given in other areas, who had gone off and thought about the conversations we like to have with people, and had new ideas to share.   The other thing that is always interesting is how Self-Advocates support and share with each other, in different ways than they do as part of a larger group.    Definately there’s good reasons to support the Edenvale Retreat. 

We have some funding still available through CLBC to do more workshops until about March.   We hope to be in Kamloops in January, and do a couple of days there, but if you’d like to host a workshop for your group, agency or even a gang you put together for the purpose of looking at what you might do diffferently, let us know.   email psn@spectrumsociety.org

At every workshop we do, we try to gather feedback on what people want to focus on and how it could be best presented.   Here’s some feedback from a recent workshop:  “2 full days next time, with maybe a day in between.”  “[liked] Information presented, ideas that have come about.”  “Shared experiences.”  “Balance of presented info and useful groupwork.”  “Useful information and dialogue.”  “Content was relevant…”  “The comfort of interaction, relevant material, global picture.”  “Inspiration, vision, re-energizing.”

“Whether community is seen as a place, a network of caring people, or a community association where people gather around areas of common interest, hospitality is the ingredient that creates true community.    We have learned from New Story approaches and from our own family and friends that community and hospitality are essential ingredients to quality of life.”   John Lord, Pathways to Inclusion: Building a New Story with People and Communities.

If you are in British Columbia and working on a project, or if your job has shifted in some way to include the creation, expansion or sustaining of personal support networks we’d appreciate your contact information for possible inclusion in an upcoming listing.   We’d also like to know about community inclusion outside of the disabilities sector.   Please email psn@spectrumsociety.org

“Your entire life journey ultimately consists of the step you are taking at this moment. There is always only this one step, and so you give it your fullest attention.”  Eckhart Tolle 

Organ trade cartoon by Dario Castillejos

(source)

The case for allowing free organ trade seems a no-brainer. Many countries, including the U.S., now forbid the sale and purchase of most organs, and, as a consequence, sick people die because of organ shortages, and poor people stay poor because they can’t “monetize” their organs. Poor people suffer a “double injustice”:

[We say] to a poor person: “You can’t have what most other people have and we are not going to let you do what you want to have those things”. (source, source)

Organ-GATT?

However, when organs are freely tradable, many extremely poor people, especially those struggling to survive, will be tempted and even forced to sells parts of their bodies. Moreover, the rich will be able to benefit disproportionately from the market because prices will be high, given that demand will outstrip supply in an ageing society. The most obvious means to balance supply and demand, and to force down prices and allow the less than wealthy patients to participate in and benefit from the market, is to create a global market without trade restrictions, an organ-GATT if you want. This will bring in the masses of poor people from Africa and Asia, pushing up supply of organs and hence bringing down prices. This will supposedly benefit both the less than wealthy patients and the very poor donors. The latter will benefit even with prices for organs falling because of increased supply, because they start at extremely low levels of income. Even the sale of a cheap kidney can mean years of income for them.

The problem with this global market is that organ extraction will take place in sub-optimal medical conditions, creating risks for donors (if you can still call them that), also in the case of renewable tissue donation. Paradoxically, the poor are driven to risk their lives in the process of saving their lives. Even in the best healthcare systems in the world, organ extraction is often very risky. In the U.S., the extraction of a section of the liver, for example, carries a risk to the donor’s life of almost 1 percent (source). That’s not negligible. I doubt anyone would cross a street if that were the odds of getting hit by a car.

I’m convinced that an opt-out regulation for cadaveric donors (meaning that everyone’s a donor after death unless an explicit opt-out), combined with non-financial encouragement of voluntary pre-death donation, is the best way to solve the organ shortage problem. A free organ market will obviously also solve the organ shortage problem, but will create new problems instead.

Renewable and non-renewable organs

The distinction between renewable tissue such as bone marrow, and non-renewable organs such as kidneys, eyes, etc. is a relevant one. If the donation of renewable tissue can take place in medically safe conditions, I can’t see a problem with being allowed to trade, on the condition that poor patients have the same opportunity and power to buy as rich ones (and that’s a pretty big “if”). The needs of the sick or disabled who risk dying or suffering because of a lack of available organ, clearly outweigh any remaining concerns.

Commodification

One of those remaining concerns is the problem of the commodification of the body. Organ trade is obviously commodification, and commodification is dehumanization. I don’t want to imply that organ trade liberalization necessarily results in “organ farms”, dystopian places where people are “cultivated” solely for the harvesting of their organs – although the Chinese criminal justice and capital punishment system for instance comes awfully close. (I sometimes wonder if deterrent and punishment is the real goal of executions in China). But people can commodify and dehumanize themselves.

The logic of economics tends to overtake all other domains of life, even those where it doesn’t belong and can do serious harm. Why is it so evident to so many that body parts are something that it supposed to be tradable? Even the most outspoken proponents of organ trade draw the line somewhere: they won’t allow people to sell parts of their brains, I guess, or their children and wives, or the parts of aborted fetuses (perhaps fetuses specially conceived and “harvested” for their parts), not even if this would fill a great social need. And yet they accept as natural that non-vital body parts should be tradable and seem to forget that irreplaceable body parts form our body and that we can hardly exist without our body. If we allow total freedom of organ trade, we will have to accept the case in which a poor father decides to sell off every single one of his organs for the survival of his family. After all, he is the master of his own body, he has a right to self-determination, and the government has no right to limit what masters of their own bodies should be allowed to do with it. If you don’t accept the legitimacy of this extreme case, you accept limitations on the freedom to trade organs. Since most opponents of organ trade also accept certain types of trade – e.g. renewable organs such as bone marrow and skin – the disagreement isn’t a principled one but one about degree.

Underlying the argument in favor of organ trade is the fiction of a market populated by free, equal and self-determining individuals who make free and rational economic decisions and agreements on what to sell and buy, free from government interference. The reality is of course that organ trade isn’t an expression of self-determination or autonomy but rather of the absence of it. And that organ trade, just like a lot of other trade, is radically asymmetrical: some are forced to sell in order to survive, especially if the price and hence the reward is very high, as it will be relatively speaking for the poor. And others will sell without rationally examining the benefits for or risks to their interests (absence of informed consent). It’s beyond my powers of comprehension that all this can be denied:

It’s true that I don’t find any of the arguments about the coercive effects of money on peoples’ decisions particularly compelling.  Megan McArdle (source)

Any potential paid organ donor is always free to decline the transaction, and is left no worse off than before. What next, will you tell me that I “coerced” Apple into sending me a Macbook? (source)

This seems to me to be more correct, or at least less outrageous:

Talk of individual rights and autonomy is hollow if those with no options must “choose” to sell their organs to purchase life’s basic necessities. … Choice requires information, options and some degree of freedom. (source)

transplanting of teeth

Free trade except for the poor?

Of course, some would say: if someone is forced by poverty to sell her organs, would you stop her and make her worse off by imposing legal restrictions on her autonomy and “reducing her resources”? That’s again the myth that markets always make things better. What if she does get some money, has a better life in the short run, but gets sick because of the operation (or do we also assume the myth of perfect healthcare for the world’s poor?) or because of the lack of an organ? Who would make her worse off? The one allowing her to sell, or the one stopping her? And anyway, there are better ways to protect the poor than to allow them to harvest their organs.

So, if we’re afraid that free organ trade might be exploitative for the poor, why not allow free trade but exclude the poor from selling? Because the poor will be, in general, the only ones tempted to sell. A wealthy person has no incentive to sell organs. Hence a free trade system restricted in this way will not solve the shortage problem, the main concern of proponents of free trade.

I’ve stated before that government interference can promote rather than restrict freedom. In the case of organ trade and donation, two specific types of interference can help:

• Restricting the freedom to trade non-renewable organs, as well as renewable organs in circumstances in which extraction poses a health risk to donors, will protect the freedom of the poor. Not their freedom to sell organs obviously – which isn’t freedom for them anyway but compulsion – but the freedom to live a healthy live.
• Imposing default cadaveric donation with an opt-out clause will protect the freedom to live a healthy live of patients in need of replacement organs. Of course, if it’s the case that for some organs cadaveric donation isn’t possible medically, I’m willing to accept an exception.

Trade restricted to post-mortem trade?

How about allowing people to sell their organs after death? This would evidently remove the health risks for donors. It could be considered a kind of life insurance for the deceased’s family. That would indeed remove all the concerns from the donor side. (The counter-argument that such a system would encourage families to kill their members for the “insurance money” seems a bit weak, and just as weak as the similar counter-argument against generalized organ trade liberalization, namely that people would murder in order to sell organs; I guess they already do).

Photo by Jonathan Cook

But assume that we would allow free post-mortem trade: what would happen with the organs? They would be sold of course, but to whom? The most wealthy first, and hence we still have our problem on the beneficiary side: wealth yields better health. Of course, that’s already the case in healthcare in general: rich people also have better dental care etc. But do we want to add to the existing injustice by allowing wealth to determine who gets an organ?

If we allow limited organ trade of deceased’s organs, we’ll have to do something on the beneficiary side in order to neutralize the effects of wealth. A lottery system could be an option. Or subsidies for the poor, or price caps etc.

More on organ trade here and here.

Within about a month, Spectrum’s new Facebook fan-page has gathered 150 fans!    We’re not quite sure what we’re going to be doing together, but here we are.   Doing it.   Administrators for the page are Aaron, Ernie, Susan, Naomi and Jules Andre-Brown.   You can add photos of Spectrum events and folks, leave messages and even socialise on our newest social-networking site (if you find a photo of yourself on the site and would like it removed, just let us know).   We’re working right now on expanding the Facebook site with a couple of other ideas – a marketplace function, where people will be able to share things they have to trade, sell or which they need, and perhaps even employment opportunities, and a “merch” store – an on-line store that will sell Spectrum logo products…   We’d really like to have a page of links to some of the sites of our team members who are artists, writers, photographers, dancers, singers, musicians, film-makers…   the list goes on and on! 

Spectrum is also now on Twitter, Flickr, Tyze and we’re working on a Delicious site for bookmarks related to our field. 

People wonder about whether Facebook is worth their time on not, but recently one of our young friends who has a dream of being a Chef, posted photos of dishes he was practising to get ready for a scholarship competition and within a couple of hours 50 people were giving him feedback and asking to be invited for dinner!   It was a powerful thing to watch.

Interestingly, if you google “Person Centred Planning,” Spectrum’s website definition is the first site that comes up!   Person Centred Planning is at the centre of everything we do – it provides the core of how our supports are designed and how our agency is organized.   And as a central theory, it requires constant vigiliance to sustain it, and a tolerance for re-thinking actions that we fall into that are not person-centered, so that we can re-think and make changes to bring things back into congruence.  

From our website:

PERSON CENTRED PLANNING

• Person-centred planning refers to a process whereby the individual and his or her support network lead the planning process. A good plan ensures that staff and other members of the team focus their time and energy on the things that matter most to the individual.
• When we first begin providing service, and annually thereafter, a team meeting is held where the individual sets goals for the coming year. Sometimes these meetings follow the Ministry’s personal service plan (“PSP”) format, while other people prefer a different format, like PATHs. The meetings are tailor-made to
  suit the needs of the individual, so it’s a comfortable and positive experience for everyone.
• The program manager assesses progress on the annual plan through regular contact with the individual and family, through team meetings and written updates, making adjustments or updating the plan as the person’s needs and desires change.

Each of us wants a life where we:

• are supported by and contribute to our communities:
  • stay safe and healthy (on our own terms)
  • have what/who is important to us in everyday life: people to be with, things to do, places to be
  • have opportunities to meet new people, try new things, change jobs, change who we live with and where we live
  • have our own dreams and our own journeys

(with apologies to Abraham Maslow)

Person-centred planning is a relatively new concept.  It differs from the old model of planning where programs and systems, not individuals, were the focus.  In the old model -

• “Planners” and “doers” were not connected
• Plans were done to meet rules, not change lives
• Goals and actions were disconnected from helping people live meaningful lives

Key Principles in Person Centred Thinking and Planning (From “Good to Great” Conference – June 2005)

• Individuals must be at the centre and lead the planning process
• Planning reflects each person’s unique strengths and gifts
• Family members and friends are partners, unless the person chooses otherwise.
• Planning describes what is important to the person now and in the future and specifies the support they require to make a valued contribution to their community
• Planning builds a shared commitment by partners to act in ways that uphold the person’s rights and responsibilities.
• Planning requires continual listening, learning and action.
• Planning processes need to be flexible and responsive.
• Policies and structures must support person centred thinking and planning
• Plans are living documents that evolve as people’s needs change.
• Successful implementation requires the organizational culture to continuously change and adapt.
• There are many different ways for people to achieve their hopes and dreams
• Everyone is accountable in a system based on person centred thinking and practice.
• Risk needs to be balanced by people’s right to choose.

TWO New Resources from MCFD:

• Your Future Now: A transition Planning and Resource Guide for Youth with Special Needs and their Families
• Transition Planning for Youth with Special Needs: A Community Support Guide

Other Planning Resources on the NET:

• http://challengingbehavior.fmhi.usf.edu/personcentered.htm 
• http://www.ilr.cornell.edu/ped/tsal/pcp/index.html?CFID=118233&CFTOKEN=17546617 
• http://www.ttac.odu.edu/Articles/person.html

There are infinite ways to accomplish the initial person centered plan that will drive our supports and, as you read, this is really just the first step in our work.   Over the next months we’ll expand on different areas of person centered planning.   Your questions and thoughts are welcome!

Brief descriptions of queerphobia, transphobia, racism, and violence follow.  Nothing too graphic.

I am queer by choice.  I am trans by choice.  I’m speaking for my experiences, and I know that some folks would like to argue with me about this.  I don’t mean to speak for anyone else.  I am interested in hearing others’ experiences, but I ask that others not speak for me.  A lot of people think of themselves as trans and queer genetically, or from birth, or socialization, or for a political statement, or that it doesn’t matter, and many other beautiful ways and reasons.  I affirm and honor others’ experiences, and I think that my experience of being queer and trans by choice are congruent and mutually affirming with others’ ways of being.

The world is built to pressure me into being a cisgendered straight woman.  As a person with white and normatively abled privilege, if I had continued to identify as a cisgendered woman and if I had identified as straight, my choices and identities would have been affirmed and upheld as natural, right, and true by my society and most of the people, cultural forms, and institutions I interacted with.  So, I do not have to be queer or trans.  If there is anything in this world I have to be, it is a cisgendered straight person.  I choose not to give in, not to concede to every pressure, every checkbox I don’t know how to fill in, every mispronoun, every street harassment.

I make the choice, against all of that violence and pressure, to be trans and to be queer.  That is sheer fighting bullheaded stubbornness.  Holy shit, that means I am really strong, to withstand a world that says I do not exist, or if I do exist, that I should not.  I am powerful, and I don’t give in.   Being queer and being trans is so beautiful and though it’s difficult, I feel blessed that I can choose to be who I am: is there anything else more wonderful?

My position as a trans and queer man is informed by my privileges, as a white, U.S.-born, normatively able-bodied person, and all of these things make it easier for me to be out, in comparison with a lot of other trans and queer people in the world.  Experiences of racism, colonialism, and ableism, among others, change the modes and probability of different kinds of queerphobic and transphobic violence, and I do not mean to say that my privileged position applies to all trans and queer peope.  I honor the needs and choices of people who are not out or who express their queerness in different ways, and I recognize their strength, as they work to survive.

Now, I know that a lot of queerphobic and transphobic rhetoric relies on queerness being a choice.  The argument goes,”Well, you choose to be queer or trans, so you should choose to be straight and cisgendered.”  A lot of counter-arguments  are based on the helplessness of queer people to control whether or not we turn out queer.  I have problems with that counter-argument, because it concedes the point: queerness is an affliction, but my goodness, we can’t help it, and so please let us continue existing.

My counterargument (and I’m plagiarizing a bit from my sister) is that yes, I choose to be queer every day.  Also, folks who think my choices should change can kindly fuck off.  I don’t go into their bedroom and attempt to convert them to the virtues of sodomy.  Now that I think of it, maybe someone should do that for them.

Information in the computer age is the last genuine free market left on earth except those free markets where indigenous people are still surviving (Russell Means)

Some of the surviving nations in North America have tried Casinos and call centers. Others have tried meat packing for freedom. Yet, unemployment remains high, over 80% for some communities, such as on the Lakotah reservations. Similarly, per capita income often remains below the poverty line. On the Lakotah reservations, per capita income is less than $4,000 annually. The exact story is of course different for each nation, but the overall results of these efforts have usually been rather bleak.

Worse still, each of these efforts require nations to participate in a culturally foreign social-economic model. Each time doing so, a small part of the culture dies in the process. That is because this model requires people to compete against each other, often by any means necessary, and to do so while using the labor of others for personal gain in a market that is often closed and where goods and services often become artificially scarce and demand is artificially generated to further extract wealth rather than meeting real needs.

Certainly, for the American Indian working at a meat packing factory or a call center a job is a means of survival for a family. But it leads to no real economic development or further growth, whether for the worker or for the nation. It is a relationship that exists because the cost of bargained labor is so very cheap on the reservation. If the standard of living and income expectations did actually rise, those so eager to place some temporary facility or industry on the reservation will often simply pull up and leave to someplace cheaper. In fact, this relationship specifically discourages investment in the kind of economic development that would produce long term growth, infrastructure, and economic facilities, because doing so both will create higher future labor costs and make it far more difficult to later leave.

Even in the case of Casinos, there are issues. Where a nation is fortunate enough to be the direct beneficial owner of a casino rather than simply licensing the rights and profits to an outside entity, this casts the nation itself in the role of extracting wealth through deliberate deception of others. It may be ironic, given that this is essentially a reversal of roles, since often indigenous lands were acquired through such tactics, but this too means people must forget who they are and what their lifeways mean and take up the very same behaviors of the invader that they found to be so very offensive. In this way, also, the nations and culture can surely also slowly die.

As I noted there are basic cultural questioned tied to economics. This was best explained to me once by Russell Means. While at the time we were talking about the social and cultural consequence of western styles education, what he said that most stuck with me was, and to roughly paraphrase his words, “Indians do not compete”. Clearly then, the logical way forward is to look at sustainable models based on voluntary cooperative economics, and there are a number examples found practiced today which do not require high levels of (presumably external) investment to get started and which have already been demonstratively effective. One example of this is found in the economics of free (as in freedom) software.

Free software underpins not just the technological foundations of the global Internet, but also the financial success of even large public corporations. Examples of this include IBM, who claims to make over $1 billion in revenue annually through free software, and RedHat (rhat), which is a publicly traded company that develops and sells free software for enterprise uses. But while free software scales even to sustain very large businesses, it also enables individuals and much smaller and entirely autonomous entities to successfully economically participate, and often with very minimal startup costs.

Free software is often expressed and provided through a copyright license, such as the GNU General Public License. The terms of such a license essentially are that one who receives free software is free to provide the software to others, whether in original form or modified, so long as they add no additional restrictions or conditions when they do so. Since they originally received the software with the full source code to compile and build it, it is necessary to offer it to others with the same. This, in economic terms, is a transaction, but not an exchange of money, it is rather an exchange of consideration.

This relationship does not in any way prevent free software from being commercially sold in any fashion. However, it does mean one cannot artificially control or otherwise restrict the freedom of what the purchaser may do with what you have sold them. Free software also offers entirely new ways for buyers and sellers to relate. Since the downstream seller may choose to make changes or fixes and then redistribute the improved version, those changes too become public, and can make their way back to the original developer and to all users of said software, who then benefit. This is where cooperative benefits scale, and in a manner that is both socially and culturally consistent with the lifeways of many nations.

Certainly not are all free software relationships expressed as buyers and sellers, it was simply the one most clear to explain to a larger audience. In fact many kinds of cooperative relationships can exist, and many different kinds of business models can be applied, and these too often will align well with traditional lifeways. Equally important, free software allows cooperative expertise. Since one cannot derive exclusive benefit at the expense of another, there is much greater incentive for people working on similar problems to do so together, even when the outcome is in free software that will be commercially sold.

With no market barriers to participation, and with the possibility for zero cost in distribution, much of the cost of commercially starting in free software are entirely infrastructure and equipment costs. Given the cooperative nature of free software, this too could lend itself to shared or cooperative costs. Individual nations could even minimally invest in setting up small community development centers where equipment and infrastructure are particularly scarce.

Free software certainly will not solve all the problems of the surviving nations alone. However, it certainly can even in a small way help contribute to the establishment of sustainable economic development as well as a means to enable individual and communal economic sovereignty even in the present world, and hence to do so without having to compromise core social and cultural principles in the process.

My Saturday mornings are zombie time and this week I have been pondering zombie-lives

How do you spend your Saturday mornings? Some people race around. I find that the best review programmes tend to be on radio and TV on Saturday mornings and I like to let the world wash over me, get up late, and spend some time reflecting on how the week went before I go out to do the shopping and join friends for a meal.

During the week I tend to push observations that are not particularly practical to the back of my mind. In my Saturday morning time, I pull them to the front and tidy them up – make sense of them.

This week I kept brushing up against full-scale denials

In quite unrelated incidents I remembered and noticed a peculiar habit that some people have ~ that we must all have ~ of denying reality.

Of course, it is absurd to think we ever have a completely accurate grasp of the world around us. And we know that there is nothing more delightful and shocking than the view of the world from a completely different perspective. But sometimes we actively deny reality.

Mother of an abused child syndrome

• I once lived and worked with people who had what I called “mother of the abused child look.” Whenever anything difficult came up, they looked past your left ear.

No one else lives here syndrome

• I lived previously in a place with quite shocking art. It had no depth perception and the background was often blurred. The background certainly never had people in it except as a silhouette on the horizon.

We are invented the moon, we really did

• I’ve known communities who live a perfectly Walter Mitty life. They have quite grandiose ideas about their contribution to the world matched only by shocking squalor of their physical circumstances and sparseness of their professional knowledge.

Denial in the big bad West

In the big bad West of the developed world, there is another phenomena. This is not necessarily an individual phenomena, I might add. We all do the things I describe, so it is a cultural phenomena – a collective way that we experience our collective life and express our collective purpose.

As it happens, as it does, a good description of this phenomenon arrived in my Google Alerts in a post on leadership from by John Ortberg, whom I don’t know, but I take it from the details is a Christian minister in the USA. Sadly there is no comment box to leave a note appreciating his work. It you are running an Alert on yourself, thank you.

Deteriorate as slowly as possible

John makes the point that many people seem to live by a motto “Deteriorate as slowly as possible.”

When you have been big, rich and powerful, inevitably there is some decline ~ at least in bigness, richness and power.  Inevitably when you live in a country that is big, rich and powerful, then you have, say, a 66% chance of not really being big, rich or powerful yourself and you live in the reflected glory of people who make your country big, rich and powerful.

The flip side of success then is deterioration. That is is just reality.  It is not a psychological phenomenon.

It becomes sad, it becomes a denial or reality, when we aren’t aware of our deterioration, or we are stuck in deterioration ~ moaning, complaining and whinging such as the English are prone to do. Deterioration is part of our life. It has to be as the shadow of success.  But we must live well within it.

How should we deal with deterioration?

How should we deal with deterioration? Gracefully? That is one option. Gluttonously – that is another option – I know someone who said she enjoyed living in decadent societies. But why not exuberantly? Why can’t we enjoy the morphing and regeneration that is a natural part of life as a snake changing its skin? Why can’t we celebrate the cyclical shriving? Why can’t we celebrate newcomers and mourn the departure of old ways in dignity?

I’ll list John Orteg’s questions for recognising communities who are deteriorating in an unhealthy way in Part Three: Questions to Recognise Cultural Deterioration and What To Do About IT

Part Two: Deny Deterioration at the Cost of Your Love of Life

Part Three: 6 Symptoms of Deteriorating as Slowly as Possible

COMMMENT! Taylor Swift on Ellen Degeneres Show Part 2/2 11/11/08 fearless album came out! justin timberlake is hot! do you guys feel bad for taylorr? opinions! … Taylor Swift Ellen Degeneres dating joe jonas album release party fearless brothers tv nick kevin

http://www.youtube.com/watch?v=bxJYPxoWv4A&hl=en

See Also : http://astore.amazon.com/blackblog-20 http://astore.amazon.com/buckinghamshireblog-20

„Das Selbstbestimmungsrecht der Völker

– vom umstrittenen Prinzip zum vieldeutigen Recht“

Ort: Waltherhaus in Bozen – Schlernstraße 1
Termin: Freitag, 27. November, 11 Uhr

Begrüßung: Dr. Ingeborg Bauer-Polo (Präsidentin des SBZ – Bozen)
Es sprechen: Prof. Dr. Peter Hilpold
Sven Knoll (Landtagsabgeordneter in Bozen)
DDr. Karl Zeller (Abgeordneter zum Parlament in Rom)

Anschließend wird zu einem Umtrunk geladen

Mit Beiträgen von Prof. Peter Hilpold (Universität Innsbruck), Prof. Jörg Fisch (Universität Zürich), Dr. Sigrid Boysen (Freie Universität Berlin), PD Samuel Salzborn (Universität Gießen), Prof. Gerhard Hafner (Universität Wien), Prof. Hans-Joachim Heintze (Universität Bochum), Prof. Timo Koivurova (Arctic Centre, Finnland) In diesem Buch wird auch auf die Selbstbestimmungsdiskussion um Südtirol Bezug genommen.

Der Ruf nach Selbstbestimmung hat die völkerrechtliche Diskussion des 20. Jahrhunderts geprägt. Das Selbstbestimmungskonzept bleibt aber auch im 21. Jahrhundert aktuell, ja es ist aktueller denn je. Weltweit werden unter Berufung auf das Selbstbestimmungsrecht Staatsgrenzen und ganze Staatswesen in Frage gestellt. Zahlreiche Völker rechtfertigen damit ihr Streben nach Eigenstaatlichkeit. Wie weit reicht nun dieser Anspruch nach geltendem Völkerrecht? Wer ist überhaupt Träger dieses Rechts? Auf diese und zahlreiche andere Fragestellungen rund um das Selbstbestimmungsrecht der Völker wird in diesem Band eingegangen, der Ergebnis einer internationalen Tagung auf Schloss Sigmundskron bei Bozen ist. In diesem Buch wird insbesondere aufgezeigt, dass das Selbstbestimmungsrecht der Völker zahlreiche Nuancen aufweist und differenziert eingesetzt auch eine beachtliche friedenssichernde Wirkung entfalten kann.
Aus dem Inhalt: Peter Hilpold: Die Sezession – zum Versuch der Verrechtlichung eines faktischen Phänomens – Jörg Fisch: Die Geschichte des
Selbstbestimmungsrechts der Völker, oder der Versuch, einem Menschenrecht die Zähne zu ziehen – Sigrid Boysen: Selbstbestimmungsrecht und Recht auf Demokratie – Samuel Salzborn: Ethnischer Selbstbestimmungsanspruch contra demokratisches Selbstbestimmungsrecht – Gerhard Hafner: Das Selbstbestimmungsrecht und Südtirol – Hans-Joachim Heintze: Indigene Völker und das Selbstbestimmungsrecht – Timo Koivurova: The Right to Self-determination of the Saami: the ideal faces the reality.

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Self-determination for people with developmental disabilities is a philosophy endorsed by the Robert Wood Johnson Foundation’s National Program on Self-Determination and is recognized by NYS OMRDD.

Self determination is essentially self directed management of resources via:

• Freedom
• Authority
• Support
• Responsibility

Its main principles are that each individual should have, with the support of freely chosen family and friends, the opportunity to have increased control over services that support them in the community:

• The freedom to plan a rich life in the community through competitive employment, organizational affiliations, spiritual development and general caring for others.
• The authority to control a certain amount of resources in order to purchase needed services.
  
• The support for building a life in the community that is rich in social associations and contributions.
  
• The responsibility to being accountable for spending public dollars in ways that are life enhancing.