A Real Canadian Autism Hero - Stefan Marinoiu

Stefan Marinoiu is not a federal or provincial political figure, or an entertainment celebrity of any kind talking endlessly about raising autism awareness without taking any action to help the 1 in 88 Canadians who suffer from autism disorders.  Stefan is a real Canadian autism hero.  He has made courageous efforts to have our federal government address Canada's autism crisis. 

Stefan has raised autism awareness without the benefit of political or media connections. He has not done so in order to obtain free travel to Banff or the UN or to augment a political career, he has done it to help his son, Simon,  and  others with autism disorders.  He has done it by twice putting his life at risk with a mid winter walk :autism" trek from Toronto to Ottawa and with a  hunger strike.  I was very pleased to meet Stefan and his wonderful family in Toronto.  Stefan did not confine his efforts to simply raising the awareness as happens with so many much less challenging efforts. Stefan actually advocated for  our federal government to get involved in a meaningful serious way to address Canada's autism crisis.   

Unfortunately the Stephen Harper-Mike Lake government does not want to acknowledge or deal with Canada's autism crisis and there will be no federal progress in Canada as long as the Harper version of the Conservative government holds majority control. Not a single member of our Harper Conservative government, not even those with family members affected by autism, have bothered to push for meaningful federal efforts to address Canada's autism crisis. I doubt though that Stefan will give up.  I will try to follow Stefan's example and continue efforts to advocate for meaningful efforts by our federal government to address Canada's autism crisis.  

Those of us who believe that our federal government should offer meaningful assistance to the 1 in 88 Canadians with an autism disorder have to look past the Harper era and look to NDP and/or Liberal governments to address Canada's national autism crisis.  We can't  give up in the face of Harper's indifference, we must keep fighting and refuse to give up.

Autism Parents: "You Need To Take Your Heart In Your Teeth And Go On ... And Go On"

"For those parents who say they are too broke and too tired...you need to take your heart in your teeth and go on...and go on...." 


Stefan Marinoiu, Medicare's Orphans

David Marley, Simon Marinoiu, Jean Lewis, 2008

The above comment by Stefan Marinoiu, father of a severely autistic son, Simon Marinoiu,  is great advice for parents of autistic children.  It is the advice of a man who has literally walked that path and knows of what he speaks. As the parent of a severely autistic son I do not always want to hear from people who know nothing of the realities of severe, low functioning autism disorders telling me what is best for my son or what I must do to help him.  When I listened to Stefan Marinoui though I was listening to one who knew of what he talked, one who had quite literally walked the walk.

On January 31, 2008 in the middle of a cold Canadian winter Stefan Marinoiu left his home in the Toronto suburb of Scarborough and began walking with only the clothes on his back to Ottawa to raise awareness about the lack of services for people like his son Simon, a strong young man with limited communication abilities and serious behavior issues. When Stefan arrived safely in Ottawa, after receiving help from well wishers he met on his journey, he met with then Health Minister Tony Clement. 

Unfortunately Tony Clement, and the government of Prime Minister Stephen Harper were not genuinely moved by Stefan's journey. They have done absolutely nothing to ensure that  all autistic children in Canada received evidence based ABA treatment for their autism. They have done nothing to ensure that autistic adults in Canada have access to decent residential care and treatment. Gazebos, prisons, jet fighters sure, but not real help for autistic Canadian children or adults.

I met Stefan and his wonderful family when I, along with Jean Lewis and David Marley of Medicare for Autism NOW!, visited their home in the Toronto area in 2008.  Stefan is a modest person of great focus and presence.  There is no hidden agenda. His concerns are clearly and succinctly expressed in compelling language as in the advice quoted above.  I was deeply moved by the Marinoiu family, for the love they have for Simon, by their struggles to help him and by the impact Simon's autism has had on their lives.

In Medicare's Orphans Stefan, wife Bernadette and daughter Lia speak about what Simon's autism is like and what it has meant to them, the impact it has had on the members of their family.  If you watch this film and listen to Stefan, Bernadette and Lia, you will be moved.  Listening to their stories again strengthens my resolve to continue advocating for my son Conor and other children and adults with autism disorders. It strengthens my resolve to fight for early intervention, effective, real education and decent residential care for autistic children and adults here in New Brunswick and across Canada.

If you are a parent of a child with an autism disorder I encourage you to view the Medicare's Orphans film and "take your heart in your teeth ... and go on ... and go on".

Medicare's Orphans: The Fight for Healthcare for Children with Autism Disorders

Medicare's Orphans. from MedicareForAutismNow on Vimeo.

Medicare's Orphans – A film about the fight to get healthcare for children with autism in Canada  is now online.  I encourage everyone with an interest in autism disorders, anyone interested in advocating for treatment and cure for this serious neurological disorder to view this film. I make a few appearances in this film. It was an honor to participate in this effort with each and everyone of those featured.  

In particular, I had the opportunity a few years ago to meet the Marinoiu family from Toronto. Their son Simon is very similar to my son Conor. I was deeply moved by my experience meeting this wonderful family. Simon's life, his future, is very close to what can be expected for my son here in New Brunswick where our system of adult care for people with severe autism disorder challenges has been frozen by a non evidence based community cliche movement that prevents any serious discussion of adult care beyond the group homes that currently can't handle the challenges presented by severe autism. The result is that severely autistic adults like my son live in a psychiatric hospital in northwestern New Brunswick.

To confront the very real challenges for Canadians with autism disorders it will be necessary for new generations of Canadian parents, and sympathetic professionals, to step up to the plate and fight. The fight has been taking place for years.  The fight must continue. Parents in particular must begin again to fight for our children.  

Begin by watching Medicare's Orphans. 

Medicare's Orphans: Autism and the Marinoiu Family

This third trailer for Medicare's Orphans, scheduled for release this fall, features the Marinoui family.  While on a previous Toronto visit I had the pleasure of meeting Stefan Marinoiu and his lovely family: wife Bernadette, daughter Lia and son Simon who is severely affected by autism.  Stefan has twice risked his life, walking in mid winter from Toronto to Ottawa, and engaging in a hunger strike,  to bring attention to the autism crisis in Canada and the need for a real National Autism Strategy, one  which treats autism like a health disorder and provides treatment to all autistic Canadians. The trailer shows some of the anguish of this caring and courageous family that has struggled to give Simon the best life possible and to bring attention to his challenges.  They are challenges shared by many Canadian families with a member severely affected by an autism disorder.   

The Medicare for Autism Now! information release accompanying the trailer is a call for your support to end health care discrimination in Canada:

Meet Stefan, Bernadette, Lia and Simon Marinoiu. They live in suburban Toronto, Canada. Simon has autism and no longer lives with his family. His devastating situation represents the fate of many autistic children in Canada who are being denied effective treatment. Simon and his family are featured in the just released third trailer advertising Medicare for Autism Now's upcoming documentary, Medicare's Orphans, scheduled for release in October.
www.medicareforautismnow.org

The film chronicles the stories of a number of families with autistic children from across Canada, each share the same problem - lack of access to effective autism treatment (ABA/IBI) via our "universal" health care system.

The film exposes some painful truths about who gets access to health care in Canada, the refusal to act by Canadian governments, both federal and provincial, and the Supreme Court of Canada's failure to protect our childrens' Charter rights, all of which rightfully brings Canada's reputation for fairness and human rights into serious question.

This film will be significant to both Canadian parents of children with autism as well as those living in other countries who live under the false assumption that Canada is a kinder and gentler place for people with disabilites. The film will also provide examples of what effective advocacy really is, what it has already achieved and what parents/supporters need to do in order to protect the gains others have made on behalf of their children, to move the cause forward, and to end health care discrimination in Canada in this generation.

To learn the history, the gains, the goals, and how to get involved in the autism treatment movement in Canada, go to: www.medicareforautismnow.org

Please forward this link, post it to your Facebook walls, and ask others to do the same. Also - very important - send it to your MLA and MP.

Thank you for your support.

Autism Hunger Strike Has Ended

Autism hunger striker Stefan Marinoiu ended his two week hunger strike yesterday. Stefan's efforts brought much attention to the cause of autistic persons and their families in Canada and impressed upon public decision makers in Ottawa and Toronto the seriousness of the Autism Crisis in Ontario and Canada.

It is a relief to me, and I am sure to his family and many friends and admirers, that Stefan has decided to end this stage of his autism advocacy and move ahead with other efforts. The determination that Stefan has demonstrated with his 11 day mid-winter Autism Trek from Toronto to Ottawa and his two week Autism Hunger Strike will come in handy in the continuing effort to obtain proper autism treatment, education and residential care in Ontario and elsewhere in Canada.

autism

Autism and Human Rights in Canada

Today is Bloggers Unite for Human Rights Day, May 15, 2008. The United Nations recently declared and celebrated April 2, 2008 as the first World Autism Awareness Day. The celebration of the event brought an inundation of media and other attention to autism and autism issues. Hopefully this historic development will lead to the recognition of the human rights of autistic persons like my son Conor, pictured above, top center, who has Autistic Disorder with profound developmental delays.

In Canada, unfortunately, much remains to be done before human rights for autistic persons, as reflected in some leading United Nations Declarations, will be recognized. In fact, progress toward such a goal took a huge step back with the Auton decision of the Supreme Court of Canada which essentially subordinated the rights of autistic persons to appropriate medical treatment to the policy making role of elected legislatures.

Auton in particular shows the distance that Canadians must go to reach the standards set by paragraph 6 of the UN Declaration on the Rights of Disabled Persons:

6. Disabled persons have the right to medical, psychological and functional treatment, including prosthetic and orthetic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.

Although Auton effectively removed the courts as protectors of the Human Rights of Autistic persons it did not preclude political action to reach those goals. Canada has had a strong autism advocacy movement led by parents of autistic children seeking full lives for their children and gains have been made from Newfoundland to British Columbia by parent led autism activism. Much remains to be done though and the continuing hunger strike, now on day 11, of one father, Stefan Marinoiu, pictured in the bottom photo, outside the Ontario legislature in Toronto, highlights the desperation of families whose autistic children lose precious development time languishing on long waiting lists for appropriate medical treatment and for autism specific education in Ontario schools.

Declaration on the Rights of Disabled Persons

Proclaimed by General Assembly resolution 3447 (XXX) of 9 December 1975

The General Assembly,

Mindful of the pledge made by Member States, under the Charter of the United Nations to take joint and separate action in co-operation with the Organization to promote higher standards of living, full employment and conditions of economic and social progress and development,

Reaffirming its faith in human rights and fundamental freedoms and in the principles of peace, of the dignity and worth of the human person and of social justice proclaimed in the Charter,

Recalling the principles of the Universal Declaration of Human Rights, the International Covenants on Human Rights, the Declaration of the Rights of the Child and the Declaration on the Rights of Mentally Retarded Persons, as well as the standards already set for social progress in the constitutions, conventions, recommendations and resolutions of the International Labour Organisation, the United Nations Educational, Scientific and Cultural Organization, the World Health Organization, the United Nations Children's Fund and other organizations concerned,

Recalling also Economic and Social Council resolution 1921 (LVIII) of 6 May 1975 on the prevention of disability and the rehabilitation of disabled persons,

Emphasizing that the Declaration on Social Progress and Development has proclaimed the necessity of protecting the rights and assuring the welfare and rehabilitation of the physically and mentally disadvantaged,

Bearing in mind the necessity of preventing physical and mental disabilities and of assisting disabled persons to develop their abilities in the most varied fields of activities and of promoting their integration as far as possible in normal life,

Aware that certain countries, at their present stage of development, can devote only limited efforts to this end,

Proclaims this Declaration on the Rights of Disabled Persons and calls for national and international action to ensure that it will be used as a common basis and frame of reference for the protection of these rights:

1. The term "disabled person" means any person unable to ensure by himself or herself, wholly or partly, the necessities of a normal individual and/or social life, as a result of deficiency, either congenital or not, in his or her physical or mental capabilities.

2. Disabled persons shall enjoy all the rights set forth in this Declaration. These rights shall be granted to all disabled persons without any exception whatsoever and without distinction or discrimination on the basis of race, colour, sex, language, religion, political or other opinions, national or social origin, state of wealth, birth or any other situation applying either to the disabled person himself or herself or to his or her family.

3. Disabled persons have the inherent right to respect for their human dignity. Disabled persons, whatever the origin, nature and seriousness of their handicaps and disabilities, have the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible.

4. Disabled persons have the same civil and political rights as other human beings; paragraph 7 of the Declaration on the Rights of Mentally Retarded Persons applies to any possible limitation or suppression of those rights for mentally disabled persons.

5. Disabled persons are entitled to the measures designed to enable them to become as self-reliant as possible.

6. Disabled persons have the right to medical, psychological and functional treatment, including prosthetic and orthetic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.

7. Disabled persons have the right to economic and social security and to a decent level of living. They have the right, according to their capabilities, to secure and retain employment or to engage in a useful, productive and remunerative occupation and to join trade unions.

8. Disabled persons are entitled to have their special needs taken into consideration at all stages of economic and social planning.

9. Disabled persons have the right to live with their families or with foster parents and to participate in all social, creative or recreational activities. No disabled person shall be subjected, as far as his or her residence is concerned, to differential treatment other than that required by his or her condition or by the improvement which he or she may derive therefrom. If the stay of a disabled person in a specialized establishment is indispensable, the environment and living conditions therein shall be as close as possible to those of the normal life of a person of his or her age.

10. Disabled persons shall be protected against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature.

11. Disabled persons shall be able to avail themselves of qualified legal aid when such aid proves indispensable for the protection of their persons and property. If judicial proceedings are instituted against them, the legal procedure applied shall take their physical and mental condition fully into account.

12. Organizations of disabled persons may be usefully consulted in all matters regarding the rights of disabled persons.

13. Disabled persons, their families and communities shall be fully informed, by all appropriate means, of the rights contained in this Declaration.

autism

Autism Hunger Strike While We Are Warm At Home Eating Supper

"When you were warm at home, eating supper last night, he was alone, at Queen's Park, shivering in the pouring rain"

- Paul Bliss, CTV News, reporting on Day 4 of Stephan Marinoiu's Hunger Strike for Autism.

Today is now Day 9 of Stephan Marinoiu's Hunger Strike for Autism. Although the strike is taking place near the Ontario Legislature Stephan is also asking the federal government to provide funding for autism treatment. The following video of the CTV report was posted on Youtube by OntarioAutism:

autism

Autism Hunger Strike - Canadian Press Report

Canadian Press has reported on the Autism Hunger Strike being carried on by Stefan Marinoiu outside Queen's Park in Toronto. Stefan has done an incredible job, once again, in bringing public attention to the needs of autistic children in Ontario. He has a press conference scheduled for tomorrow morning. People should get out and support Stefan tomorrow.

I don't know if my advice will be heeded but I hope Stefan has a time line in mind to bring this Hunger Strike to an end. Autistic children in Canada need a strong advocate like Stefan but they need him, more than his memory, to help them.

CP : TORONTO — A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.

Stefan Marinoiu, 49, will call on the government Tuesday to move more quickly to provide treatment for children with autism, including his teenage son.

He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.

Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.

Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.

She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms.


On another note, I have trouble understanding this great debate in Ontario about IBI versus ABA as those expressions are used by Education Minister Wynne and others, including parents, in Ontario. Intensive Behavioral Intervention IS ABA. It just refers, to the intensity - the number of hours per week of intervention. If it is provided to children between two and five it is typically referred to as Early Intensive Behavioral Intervention. But it still remains ABA. See Autism and ABA EIBI Saves Up to $2,500,000 SUMMARY: Cost-benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism John W. Jacobson,James A. Mulick,and Gina GreenIn Behavioral Interventions, 1998, Volume 13, 201-226 :

" Early Intensive Behavioral Intervention (EIBI)

Studies have demonstrated that intensive early intervention using the principles and methods of applied behavior analysis (ABA) can produce substantial benefits for many children with autism/PDD (Anderson et al., 1987; Birnbrauer & Leach, 1993; Fenske et al., 1985; Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). Although there were some variations in procedures across studies, the interventions generally met the five criteria listed as essential by Guralnick (1998) and Ramey and Ramey (1998).

The interventions:

1. emphasized skill development through positive reinforcement;
2. started with an assessment of each child's current skills and deficits; instructional objectives, teaching methods, pacing, skill sequences, and reinforcers were all customized to the characteristics and needs of each child;
3. addressed all skill domains;
4. used frequent direct observation and measurement of individual performance to determine if progress was occurring, and adjust instructional methods accordingly;
5. included parents as co-therapists; and
6. were directed and supervised by individuals with postgraduate training in behavior analysis plus extensive hands-on experience in providing ABA intervention to young children with autism."
   

autism

Autism Hunger Strike Comment by Julia Munro MPP York-Simcoe

ONTARIO LEGISLATURE - MAY 8, 2008

MEMBERS' STATEMENTS

AUTISM TREATMENT

Mrs. Julia Munro : "This morning, just in front of Queen's Park, I met with Stefan Marinoiu. Since Sunday, he has been on a hunger strike demanding that this government take action on autism. Stefan is out in front of this building because he has an autistic son and he wants his son to receive the treatment he needs." "Yesterday, to her credit, the Minister of Children and Youth Services came out and met with Stefan. Now it is up to her to talk to the Premier and the Minister of Finance and find the money to meet the needs of autistic children like Stefan's son." "I asked Mr. Marinoiu twice to give up his hunger strike, but both times he said no. It is not good for his health, but he is out there today because of his love for his son and because the government will not help him." "No one would go on a hunger strike unless they were desperate. Families whose autistic children have been left to linger on waiting lists are desperate. They need your help, and it is time for you to do something."

- Julia Munro, MPP York-Simcoe, as reported on Yesterday at Queen's Park

autism

Stefan Marinoiu Autism Hunger Strike - Day 7

Torontoist Photos, May 10 2008

Today is May 11, 2008 and Stefan Marinoiu is continuing the Autism Hunger Strike that he began on May 5 outside Queen's Park in Toronto. If the decision was mine to make I would end Stefan's hunger strike now. With his existing diabetes condition Stefan's health is at serious risk. But the decision is not mine to make. The decision is Stefan's and he showed during his 11 day Autism Winter Trek that he is a very gutsy and determined individual. I spoke with Stefan very briefly by cell phone yesterday. I expressed my admiration for what he is doing but I also asked him if he would consider setting an end date for his hunger strike. Stefan answered that he would end his strike when something is done to help autistic people.

Stefan has a 15 year old son who is autistic and who received no autism specific treatment or education services. Stefan wants to help his son and others with autism. A Friday May 9 video update can be viewed on the Hungerstrike For Autism Now Facebook group. In the video Stefan outlines 3 goals he wishes to accomplish for autsm:

1) Get rid of the waiting lists for autism treatment in Ontario by November;

2) Have ABA by professionally trained people in the schools by September 2008;

3) A federal commitment to national guidelines and financing for autism treatment and an autism agency within the federal health care system.

These are not impossible goals. As Jean Lewis of FEAT-BC and Medicare for Autism NOW! said about amending Canada's national Health Care Act to include autism treatment - all it takes is political will.

The first two goals on Stefan's list have been implemented, or begun to be implemented already in New Brunswick. Training is critical. New Brunswick has been training autism support workers, clinical supervisors, teacher assistants and resource teachers for several years at the University of New Brunswick College of Extended Learning Autism Intervention Training program. Preschool autism treatment is provided through authorized agencies monitored by government. Trained teacher assistants have begun providing ABA in New Brunswick schools. My son Conor has been receiving ABA based instruction by a UNB-CEL Autism trained TA with plans and supervision by resource teachers and mentors trained at UNB-CEL for the past 4 years. If New Brunswick can make substantial progress towards helping autistic children why can't Ontario?

The drive for a National Autism Strategy has also been underway for several years. Two members' motions have received substantial support from Members of Parliament. But a commitment by a governing party is required to get Canada to face up to its responsibilities toward autistic people and provide financing to the provinces for autism treatment. The Conservative government of Stephen Harper will never make that step. That is clear from everything ever written by Harper and it will not change. The NDP has provided great support in the person of MP Peter Stoffer and others but have never come close to taking power federally in Canada. Only the Liberal Party can form the government and despite the very considerable support of Liberal MP's and Liberal Senator Jim Munson the Liberal Party has still not committed to implementing amendments to include autism treatment in Canada's national health care legislation.

Hopefully political leaders in Ontario, Ottawa and elsewhere in Canada will find the will to help autistic children and adults in Canada. If they are not sure what "willpower" looks like they might watch Stefan Marinoiu outside Queen's Park in Toronto.

In the meantime I hope Stefan takes care of himself and those who are with him help him keep a close eye on his health.

autism

Autism Hero Stefan Marinoiu's Hunger Strike For Autism Now

There are many ways parents and other concerned citizens can advocate for health, treatment, education and residential services for autistic children and adults. Some join organizations, hold awareness meetings with government, business and the public, write letters to the editor and so on. Stefan Marinoiu of Toronto, who I met a couple of weeks ago during the recent Medicare for Autism Campaign NOW! visit to Toronto and Oakville, goes much further. Stefan has put it all on the line advocating for autism. And he is doing it again, right now. Stefan began a hunger strike for autism on May 5 outside Queen's Park in Toronto.

This winter Stefan walked for 11 days, over more than 200 miles, from Toronto to Ottawa, in the middle of a tough Canadian winter, blizzards and all, in an effort to meet Alleged Health Minister Tony Clement to ask the Canadian government to do something to help autistic people in Canada. He was traveling on foot with no warm trailer to retire to at the end of the day or if things got rough. With his winter autism trek Stefan literally put his life on the line advocating for autism change. Stefan got a 15 minute meeting with Minister Clement who said very little of substance. While the alleged federal Health Minister was not moved by Stefan's efforts parents of autistic loved ones across Canada were very moved. It was a privilege for me to meet Stefan in Toronto and Oakville. He is a genuine and compassionate person and has a great family.

Stefan's daughter Lia has started a Facebook group HUNGERSTRIKE for AUTISM NOW on which you will find updates and information about Stefan's Hunger Strike for Autism Now. As Lia points out her father is a type-2 diabetic. His hunger strike again poses serious risks to Stefan's health. Stefan's willingness to put it on the line for autism is a reflection of his tremendous personal courage and his strong convictions. It also reflects his frustration with the lack of help for autistic people like his son, 15 year old Simon, as shown in this Toronto Sun video:

I hope that Stefan takes care of himself as he tries again to impress upon government and public decision makers the impact that autism is having on autistic persons and their families and the need to take serious action to address Canada's autism crisis.

autism

Medicare for Autism NOW! in Oakville, Organizing and Sending A Message

It was a warm sunny day in Oakville yesterday as the Medicare for Autism NOW! team gathered at the Iroquois Ridge Community Centre to meet families in the communities west of Toronto, to organize and to send a message to ALL federal politicians: Canadians are suffering from a NATIONAL autism crisis. Some autistic children, depending on where they live, receive NO treatment for autism. The lack of treatment prevents some autistic children from living a full life and imposes emotional and financial hardship on family members.

Many of us have talked about a National Autism Strategy to address Canada's national autism crisis for years. Some politicians of character and conscience, people like Senator Jim Munson and MPs Andy Scott, Peter Stoffer and Shawn Murphy have actively campaigned for a National Autism Strategy. Stephen Harper, alleged Health Minister Tony Clement and Conservative MP and autism father Mike Lake on the other hand have largely mocked the efforts for a national autism strategy. Aided and abetted by Dr. Rémi Quirion and the CIHR the national autism strategy has been reduced to a less than mediocre web site and a secretive, politicized and staged National Autism Symposium that resulted in absolutely NO autism information being disseminated to Canadians.

Yesterday I had the privilege of speaking at the Oakville rally along with Jean Lewis who has led litigation and political autism battles in British Columbia and experienced political organizer David Marley. We were joined by Jennifer O'Brien from Oakville, autism winter trek hero Stefan Marinoiu from Toronto, Barry Hudson from Toronto and constitutional lawyer Deborah Coyne from Toronto. Medicare for Autism NOW! is national in scope. We are organizing coast to coast and we have a message for federal politicians of all stripes. Something must be done NOW. We need Medicare for Autism NOW. David Marley, show in the bottom picture below has prepared a strategy. A number of ridings that were decided by 2% or less in the last election will be targeted for election action by the Medicare for Autism NOW team. We will be making an impact in those ridings on behalf of the candidates, whatever their political stripe, who support Medicare for Autism NOW. David Marley is also organizing of team of people with political organizing skills and experience to help get our message across effectively.

One of the key ridings will be the Parry Sound Muskoka riding of Alleged Health Minister Tony Clement. Mr. Clement won by one of the smallest margins of any MP in Canada in the last election. Stefan Marinoiu, David Marley and Jean Lewis toured the riding this week and apparently there is already, for various reasons. substantial dissatisfaction with Mr Clement amongst his riding constituents who were also very supportive of the Medicare for Autism effort. Medicare for Autism NOW! will be active in the riding of alleged Health Minister Clement to remind constituents of Mr Clements refusal to help autistic Canadians and their families.

Iroquois Ridge Community Centre in Oakville

Jennifer O'Brien

Jean Lewis

Stefan Marinoiu

Deborah Coyne

Barry Hudson

David Marley

autism

Medicare for Autism NOW! Meets Sandie Rinaldo and CTV

Yesterday was a big day as Medicare for Autism NOW! met Sandie Rinaldo and CTV

The CTV camera crew sets up

Jean and David arrive

Gary from CTV briefs Stefan, Jean and David

Jean and Sandie Rinaldo prepare for the interview

Afterwards its over to the CTV Toronto offices in the Globe and Mail
building before heading out for lunch

autism

Facing Autism With Stefan Marinoiu and Friends

At the end of my travel day to Toronto I met with autism's winter trek hero
Stefan Marinoiu, Jean Lewis and David Marley. Stefan invited us to dinner at his home
where his wonderful wife Bernadette had prepared an awesome meal for us. We met
Stefan's beautful family, Bernadette, sons Paul and Simon and daughter Lia.

Paul, Bernadette, Lia and Stefan

David Marley, Simon, Jean Lewis

Stefan, David, Jean and me, "the face that was made for radio", in back

Facing Autism In Toronto and Oakville

Tomorrow I will be 'goin' down the road', flying actually, to Toronto and then on to Oakville where I will be speaking as part of a national autism awareness and advocacy campaign. I will be joining a team of dedicated parents and concerned citizens from FEAT-BC and FEAT Ontario who are advocating for a real National Autism Strategy; for the inclusion of autism in Canada's medicare system so that autistic children, wherever they live in Canada, will have access to effective evidence based treatment.

For me, the trip will be a homecoming of sorts. I worked in Toronto for a few years in the 90's. Both of my wonderful sons were born down the QEW at the Joseph Brant Memorial Hospital in Burlington. When Conor was born there 12 years ago I had almost no awareness of autism beyond some vague movie imagery of autistic savants. I did not know then what autism would come to mean for Conor or our family. Two years later I had returned to New Brunswick and after Conor's diagnosis became immersed in the world of autism and, by necessity, autism advocacy.

For that time, Conor was diagnosed at a relatively early age, 2 years. He was diagnosed after tests and observations over a period of several months which also occurred after time waiting for our appointment with the pediatrician. We had sought medical assessment because of lack of speech, lack of interaction of the kind that a child usually shows with their parents and because of a variety of odd behaviors.

When Conor was diagnosed there was very little in the way of autism specific services or information available in New Brunswick. Along with a number of other concerned parents I began my life as an advocate for my son, and for effective autism treatment, education, and residential care. Although much remains to be done, we have accomplished much for a small province lacking the financial resources of wealthier provinces. One of the tools we used to make gains for autism services in Canada was the trial decision in the Auton case, which was upheld on appeal by the British Columbia Court of Appeal but was ultimately overturned by the Supreme Court of Canada. Notwithstanding the SCC reversal the trial decision in Auton set out accurately the state of expert opinion on the effectiveness of ABA as a treatment for autism spectrum disorders, information that was very helpful in advocating publicly for the creation of autism specific services.

Notwithstanding the advances made since the trial decision in Auton Canada remains a patchwork quilt in terms of provision of autism treatment. Oil rich Alberta provides substantial funding for autism treatment until age 18 while next door in Saskatchewan they are just starting to provide autism services. A national autism strategy, inclusion of autism treatment in Medicare, is imperative if all autistic children in Canada are to benefit, and benefit fully, from intensive early intervention.

I will be honored to travel to Toronto and Oakville and join the people from FEAT Ontario, FEAT-BC (including people like Jean Lewis one of the "Auton" parents), and fellow speakers like Constitutional lawyer Deborah Coyne and autism's winter trek hero Stefan Marinoiu The Supreme Court of Canada effectively removed the courts and the Constitution of Canada as effective tools for helping ensure that autistic children receive effective evidence based treatment in Canada. We have to get political to ensure that all autistic children in Canada are treated equally and receive the treatment they need to prosper and grow. To accomplish such a large undertaking we all need to come together and advocate EFFECTIVELY for medicare for autism.

If you are interested in getting involved in advocating for medicare for autism I hope to meet you in Toronto and Oakville. See you there!

"Medicare for Autism Now!" Rally

Saturday, April 19th, 2008

2:00 p.m. to 4:00 p.m.

Iroquois Ridge Community Center,

1051 Glenashton Drive,

Oakville, Ontario, L6H 6Z4

autism

Autism Trek Update

In Blizzards no match for man on 450K walk for autism the Ottawa Citizen interviews Stefan Marinoiu, updates his gutsy mid winter trek to Ottawa to plead with federal politicians for a national autism strategy and describes some of the dangers he is facing on his trek:

"The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, have kept an eye out for him, picking him up several times and driving him into the nearest community. "They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second but I take the next step. I am walking for all the tens of thousands who are like my son. No matter what, I am going to accomplish this.""

autism

Autism Trek

Stefan Marinoiu is walking 452 kilometres from Toronto to Ottawa to raise autism awareness in Canada. Specifically he plans to speak with the federal government about increasing funding to support families like his who are dealing with autism and to fund more autism research. Mr. Marinoiu's trek is motivated by autism reality, the reality of raising a 15 year old autistic boy:

Marinoiu has a 15-year-old son who was diagnosed with autism when he was a child.

Marinoiu and his wife have struggled to provide proper support while their son's condition has deteriorated with age. He has now become aggressive, a common symptom in autistic children, and Marinoiu is afraid the Children's Aid Society may take him away, fearing he could hurt their younger six-year-old child.

"His autism has progressed to the point that communication is a struggle," Marinoiu said. "We just do not have the money to provide proper care for him."

- The Belleveille Intelligencer

Rhetoric about finding the joy in your child's autism does not help families like the Marinoiu's. Real solutions to difficult and at times heart wrenching challenges are needed. Hopefully the federal government will give Mr. Marinoiu an audience in which they listen to his concerns and come up with ways it can help families like the Marinoiu's. Not every autistic person makes submissions to the Supreme Court of Canada or the Canadian Senate. Some face much more serious challenges and require much more help to live a decent life in this country. Hopefully Prime Minister Stephen Harper and Health Minister Tony Clement will listen to this dedicated Dad who has put it on the line to trek from Toronto to Ottawa in the cold Canadian winter.

autism