Another blog of mine from the Ruderman Family Foundation blog
By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers
Hardly noticed until Time Magazine reported on it recently, is the availability, for expectant mothers to learn with almost 100% certainty and accuracy whether their unborn child will have Down syndrome. The simple blood test is performed at 10 weeks of pregnancy and checks for the presence of markers for the extra chromosomal material that causes Down syndrome. Expectant mothers have already been given this simple blood test and the test has been administered without one essential aspect: accurate information about the joys and challenges of having a child with Down syndrome.
In a society that values perfection, these tests have been developed and are presently offered with a built-in bias against people with disabilities. For now, the test identifies Down syndrome, a genetic condition with which I have much experience. It will not be too long when the same simple blood test will be able to screen for other conditions like Alzheimer’s, breast cancer and schizophrenia. Can you imagine if we were robbed of the contributions that people with these conditions have made?
We already have too much experience with the horrific outcomes when humans think they can decide who is worthy of life. We should all be very worried that this test will surely lead to the rapid decline in the number of people with Down syndrome and then we will take this knowledge and apply it to other conditions. While it may not be as easy to point to people with Down syndrome and their contributions to our society, I can tell you about the contributions of my son, Jonathan, to my world and to the world of every single person he encounters. He breaks stereotypes and long-held beliefs about people with disabilities and, in doing so, he has single-handedly made the world a better place.
When he volunteers at the Boys and Girls Club, Jonathan becomes a contributor. When he files his taxes, Jonathan becomes responsible. When he accompanied his confirmation class to the Holocaust Museum and announced to the assembled group of typical students and religious school teachers that the Nazi’s “killed kids like me,” Jonathan became the teacher.
Some people may say that he suffers from having Down syndrome and some of the medical conditions that accompany it. I can tell you this — Jonathan does suffer. This year he suffered as he watched his beloved Red Sox crumble in September and crush his hopes for a post season and he still suffering from the New England Patriots Super Bowl loss. Just like millions of other fans, he is just now beginning to be able to talk about it.
On any day, however, he will tell you that he loves his life. Is there any other reason to be?
– Jo Ann Simons
Monday, March 12, 2012
Monday, February 13, 2012
Turning 21: Bittersweet Birthday for Young Adults with Disabilities
I occassionally blog for the Ruderman Family Foundation and this is my latest blog:
In a recent Boston Globe column, (January 29), Joan Vennochi brought us the story of James Nadworny, a young man with Down syndrome, who recently celebrated his 21st birthday. While it was undoubtedly a wonderful occasion, it would bring him and his devoted family closer to the day when he turns 22, a milestone, to paraphrase Don McLean, when “the music died.”
In Massachusetts and in most states, people with disabilities and their families have been “happy for a while.” People like James and my son, Jon, through the age of 22, are guaranteed an education but, unlike the majority of special education students, who will go on to college or careers, our children need additional supports to achieve the dreams and hopes we have for them.
“Bad news is on the doorsteps” because our children are entitled to nothing after their education ends. Continuation of support depends entirely on the state budget process. The support that individuals with significant disabilities need to be successful is not adequately funded and the funding gets tougher every year.
I know. I have been advocating on behalf of persons with disabilities for over 30 years. I know our State House too well and I get tired of begging for a society to see the worth of our children and adequately fund the services they need and to pay the dedicated staff who work with them a living wage.
My son was lucky. He is 32 and when he turned 22, the economy was stronger and the political will to provide him the supports he needed was stronger. As a result, he received the support he needed to work and live independently.
James is turning 22 in the worst possible economic time and the hopes of his family, for him to live a full, productive and meaningful life, should be the hope all of us has for James.
In a recent Boston Globe column, (January 29), Joan Vennochi brought us the story of James Nadworny, a young man with Down syndrome, who recently celebrated his 21st birthday. While it was undoubtedly a wonderful occasion, it would bring him and his devoted family closer to the day when he turns 22, a milestone, to paraphrase Don McLean, when “the music died.”
In Massachusetts and in most states, people with disabilities and their families have been “happy for a while.” People like James and my son, Jon, through the age of 22, are guaranteed an education but, unlike the majority of special education students, who will go on to college or careers, our children need additional supports to achieve the dreams and hopes we have for them.
“Bad news is on the doorsteps” because our children are entitled to nothing after their education ends. Continuation of support depends entirely on the state budget process. The support that individuals with significant disabilities need to be successful is not adequately funded and the funding gets tougher every year.
I know. I have been advocating on behalf of persons with disabilities for over 30 years. I know our State House too well and I get tired of begging for a society to see the worth of our children and adequately fund the services they need and to pay the dedicated staff who work with them a living wage.
My son was lucky. He is 32 and when he turned 22, the economy was stronger and the political will to provide him the supports he needed was stronger. As a result, he received the support he needed to work and live independently.
James is turning 22 in the worst possible economic time and the hopes of his family, for him to live a full, productive and meaningful life, should be the hope all of us has for James.
Thursday, February 9, 2012
VERC Enterprises Shows Us the way
How do we get the word out that people with intellectual disabilities are an asset in the workplace??
Friday, February 3, 2012
Monday, January 30, 2012
Tuesday, January 10, 2012
Collaboratives try to Distract the Legislature by Focusing on C766 Schools.
Thank you to Larry Sauer, Guest Blogger
In recent months Educational Collaboratives have been under a great deal of scrutiny because a few collaborative directors have taken advantage of the lack of regulation and financial accountability to enrich themselves at the expense of special education students. Like our Chapter 766 schools, Cardinal Cushing School and St. Coletta’s Day School, Educational Collaboratives serve school districts by providing special education services to low incident populations as well as provide districts with a variety of other services including transportation, IT services, and Medicaid Reimbursement services. Unlike our schools, Educational Collaboratives have been largely unregulated and financially unaccountable.
The concerns uncovered by the State Auditor’s Office at the Merrimac Educational Collaborative and a few other collaboratives have brought this lack of regulation and accountability to the attention of the legislature and they are in the process of taking action to increase regulations and accountability for the collaboratives. Senate Bill 2101, which will be taken up in the Senate today is intended to address the recent scandal involving the alleged misuse of millions of taxpayer dollars by officials of the Merrimack Education Collaborative. The bill will provide badly needed oversight of the governance and financial activities of education collaboratives to assure public accountability and transparency.
Unfortunately, the collaboratives are fighting back against these efforts by trying to shift the legislature’s focus away from the collaboratives and on to schools like ours. Two proposed amendments, 13 and 14 to Senate 2101 are stacked against C766 schools like ours. The proposed amendments seek to direct attention away from the lack of accountability in education collaboratives and, instead, conduct reviews of C766 schools by commissions dominated by education collaboratives and public schools.
There are a number of problems with the proposed amendments:
• Amendment 13 calls for a study of the effectiveness of C766 schools, collaboratives and public schools by a commission dominated by collaboratives and public schools, but with not one representative from C766 schools.
• Amendment 14 calls for a review of the tuition setting process and salaries in C766 schools by a different commission with 14 members – and only one representative from C766 schools.
• Amendment 14 calls for the commission to obtain input from groups ranging from education collaboratives and human service providers – but not from C766 schools.
We urge you and all families, school staff, Boards of Directors, and advocates to call your State Senator today to ask them not to support amendments 13 and 14 to Senate bill 2101 sponsored by Senator’s Tarr and Baddour.
Vice President for Student Program and Services
Cardinal Cushing Centers
The concerns uncovered by the State Auditor’s Office at the Merrimac Educational Collaborative and a few other collaboratives have brought this lack of regulation and accountability to the attention of the legislature and they are in the process of taking action to increase regulations and accountability for the collaboratives. Senate Bill 2101, which will be taken up in the Senate today is intended to address the recent scandal involving the alleged misuse of millions of taxpayer dollars by officials of the Merrimack Education Collaborative. The bill will provide badly needed oversight of the governance and financial activities of education collaboratives to assure public accountability and transparency.
Unfortunately, the collaboratives are fighting back against these efforts by trying to shift the legislature’s focus away from the collaboratives and on to schools like ours. Two proposed amendments, 13 and 14 to Senate 2101 are stacked against C766 schools like ours. The proposed amendments seek to direct attention away from the lack of accountability in education collaboratives and, instead, conduct reviews of C766 schools by commissions dominated by education collaboratives and public schools.
There are a number of problems with the proposed amendments:
• Amendment 13 calls for a study of the effectiveness of C766 schools, collaboratives and public schools by a commission dominated by collaboratives and public schools, but with not one representative from C766 schools.
• Amendment 14 calls for a review of the tuition setting process and salaries in C766 schools by a different commission with 14 members – and only one representative from C766 schools.
• Amendment 14 calls for the commission to obtain input from groups ranging from education collaboratives and human service providers – but not from C766 schools.
We urge you and all families, school staff, Boards of Directors, and advocates to call your State Senator today to ask them not to support amendments 13 and 14 to Senate bill 2101 sponsored by Senator’s Tarr and Baddour.
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