For the Disabled, Age 18 Brings Difficult Choices
By MARC SANTORA
Published: May 14, 2008
Outside Sam Stabiner’s room pumps the steady drone of ventilators, giving life to his neighbors breath by breath. Most are in their 80s and 90s, in the twilight of their years.
The Stabiners’ predicament, however, is far from unique. As medical advances have allowed patients who might have died as children to survive into adulthood, the patients are falling into a void in a health care system that has yet to develop institutions for the young and “medically fragile.”
Each year 500,000 youths in the United States with special health care needs resulting from ailments like congenital heart disease, cystic fibrosis, diabetes, renal disease and sickle cell turn 18, according to a survey conducted by the United States Department of Health and Human Services.
Many of these young people will transition to adulthood smoothly, but for the most seriously disabled, the options for care often prove limited. As a result, about 8,000 people under age 30 are among roughly 1.4 million nursing home residents, according to the Centers for Medicare and Medicaid Services.
“This is a problem that has gone largely unrecognized and is only going to grow,” said Dr. Edwin F. Simpser, the chief medical officer at St. Mary’s Healthcare System for Children, the largest provider of intensive rehabilitation and specialized care for severely ill and disabled children in New York.
At St. Mary’s alone there are some 200 children aging out of its program in the next few years. “We could be talking about 70 percent of those kids ending up in a nursing home if we don’t find an alternative,” he said.
While the situation is not confined to New York, it varies state by state. “The people we are talking about did not exist 50 years ago,” said Dr. Miriam Kaufman, founder of the Good 2 Go Transition Program at the Hospital for Sick Children in Toronto. “We simply don’t have a model for these children.”
As the children grow older, so do the parents, making intensive home care more difficult, if it was even possible to begin with.
At 15, Sam Stabiner was a picture of health, with a perfect attendance record at his school and a normal life.
Then the headaches started, growing mysteriously more severe until he had to be hospitalized, fell into a coma and barely survived what doctors now believe was a rare form of meningitis.
For the next five years, he received intensive care at St. Mary’s, which provides care for some 4,000 children through inpatient, home-care, and community-based programs. The demand on the institution is so great, it is planning a major expansion of its Queens center in coming months.
Mr. Stabiner made slow progress, using a wheelchair and with only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five. Beyond the care at St. Mary’s, he attended classes at Public School 79 in Manhattan, which is for children with special needs. He will age out of that program next year, his parents said.
His care is complicated because he had a tracheotomy and needs assistance eating, via a feeding tube. While he has regained some motor skills, the continuing medical care required by the tracheotomy led to his being categorized as medically fragile.
Still, when he turned 18, his parents were shocked to learn how that categorization significantly limited the options for their son’s care.
Erroll Stabiner, 67, said he contacted 87 institutions across the city, the vast majority traditional nursing homes, and found only three that had clusters of young adults. All of those were far from his home and none were particularly appealing, leaving him to try to place his son at the Isabella campus at Audubon Avenue and 190th Street, which had no history of working with young adults.
The administration at Isabella’s was initially reluctant, but after executives at St. Mary’s pressed the case, officials at Isabella’s relented.
The setting that the young Mr. Stabiner left could hardly be more different from the one he entered.
At St. Mary’s, which was the first inpatient palliative care center for children in the country, there is one health worker for every four patients. The rooms are brightly painted, with separate areas for school, recreation and physical rehabilitation. There is an attempt to allow even the most severely disabled patients to develop a routine and build relationships.
Mr. Stabiner’s old room is right off one of the main playrooms, filled with games and toys.
Michael, 17, whose family did not want to give a last name, is now residing on the hall after a nearly fatal car crash left him with a severe head injury. While he has no feeding tube, Michael will also be aging out of St. Mary’s soon and his family could face a similar quandary.
The doctors and psychologists at St. Mary’s believe the group setting and the encouragement of other children with similar ailments help speed rehabilitation, or at least provide comfort, because they are reminders that the children are not alone.
At Isabella’s, Mr. Stabiner is often without any diversions. His parents, who visit six days a week, fear that he will feel isolated and have asked the nurses to put him out by their station so he can get more daily stimulation. To help make him feel young, the Stabiners bought him an array of T-shirts with smart-alecky sayings that make their son laugh.
Despite the doting of the nurses, there is no question that the parents feel something has been lost.
“When we found out Sam was aging out, we were devastated,” said his mother, Leslie Stabiner, 66. “It was very depressing to realize that in a city like New York there are just no facilities.”
And it was not just her son who missed the company. Mrs. Stabiner said she and her husband had developed friendships with other parents at St. Mary’s, some of whom are now facing a similar problem.
For instance, one of the children from their son’s floor at St. Mary’s, Justin, just moved into Isabella’s on the floor above his after the Stabiners told them about their experience.
Mark J. Kator, the chief executive officer of Isabella’s, said that having only one or two people as young as Mr. Stabiner in the 700-bed institution created obvious difficulties.
“It presents challenges in that we are responsible for creating an environment that is good for the patient,” he said. But despite their best efforts, he said, “we are not going to create a milieu that is best for them.”
The situation has propelled the administration at St. Mary’s to begin an aggressive effort to establish a clinical model for new institutions equipped to handle medically fragile children as they age out of existing programs.
“It’s something totally new, so part of it is just educating people about the situation,” Dr. Simpser said. “We may also need to push for specific legislation.”
He said that St. Mary’s officials were exploring the idea of establishing small institutions in homelike settings — with perhaps as few as six young adults — where there would be one or two health professionals on duty at all times.
But Dr. Simpser said that if his institution did not push patients out after they turned 18, it could no longer accept new patients.
“It is a terrible dilemma,” he said.
Wednesday, May 14, 2008
Saturday, May 10, 2008
Friday, May 2, 2008
AICARDI SYNDROME
Here's are two linka for information & research for Aicardi Syndrome site:
http://www.ninds.nih.gov/disorders/aicardi/aicardi.htm
http://www.aicardisyndrome.org/index.php?pname=whatis
http://www.ninds.nih.gov/disorders/aicardi/aicardi.htm
http://www.aicardisyndrome.org/index.php?pname=whatis
Thursday, May 1, 2008
The More Things Change: Part One
One of the my child's advocates early on suggested reading a book called, "The Child That Never Grew" by Pearl Buck. What I found interesting about Pearl Buck's journey is how our attitude toward disability in general hasn't changed all that much. The way we treated "disability" back in Pearl's day was to send our children off to a public or private institution where they were cut off from society. They were never seen again.
Although we see our children out and about, many still exist on the margins because instead of "warehousing" their bodies in institutions, we are "warehousing" their needs in public schools burying them under paperwork created from the legislation that was put there to protect them. We are warehousing their "needs" instead of building on their ability.
Many children with atypical needs today are being "warehoused" in public schools where they are "rolled" in and out of classrooms at what is considered "appropriate" and "inappropriate" times and then used as instrument to be measured once or three times a week because of what is written their Individualized Education Plan or IEP. They are children first, not instruments to be measured.
"No Child Left Behind" legislation stole away from my daughter her right to a free public education guaranteed by The Individuals with Disabilities Education Act or IDEA laws established in 1974 by enforcing curriculum guidelines into her IEP among other things which is illegal. It also serves as the future "green light" for her to be pulled in and out of a typical classroom at someone else's will. It is this IDEA 1974 law that safeguards her rights to receive an appropriate education based on her atypical needs and "No Child Left Behind" legislation that takes this right away from her.
The Frederick A. Breyer School was a school that served kids in the community with atypical needs through their atypical classrooms; it was a school where children were allowed to be children first, not instruments to be measured. It was a school that offered therapies for children with severe disabilities to develop independent life-skills according to each child's need which takes time, patience, and focus. It has been closed by the HC/dd formally known as MR/dd Superintendent and Board and these services will be lost forever to children in our community.
When I read from e-mail transmission from a tax levy review committee member that it was HC/dd who suggested (i) closing one of three adult education centers and (ii) shifting some of the MR/dd-provided services to children onto the respective school districts; and when I became personally involved in the carnival of politics and associated business that determined where my child goes to school, how her classroom should look, and what therapies she should receive, it is at most a very sad commentary of corrupted and failed local, state, and federal government.
The Cincinnati Enquirer, Cincinnati Post, Cincinnati WCPO-TV and other television news stations refused to investigate what qualifications"Maximus," the Columbus, Ohio company, hired by the Hamilton County Tax Levy Review Committee, had to determine how special education classrooms for severely disabled children should look like and how services should be rendered to children with severe disabilities.
Furthermore, the Cincinnati media did a terrible disservice to all our children with disabilities by failing to report to the public exactly who was responsible for closing the school or asking why MR/dd administration denied this information to their clients and Hamilton County property owners by hiding it as "continuing children services" on compaign cards until after the Mental Retardation tax levy was passed and why the teacher were told not to tell the parents. Why in April in 2005, there was still discussion with PTA personnel atBreyer about options still being considered and waiting until 2 weeks before summer vacation to notify parents the school was closing.
MR/dd refused to consider the available "financial" alternatives and solutions to keeping the school open and told the commissioners that closing the school was only a matter of "inconvenience" to a few families. The media fell short of investigative reporting by refusing to look at the attempted HC/dd school closing in 1997 and why suddenly it was okay to close one in 2006 based on "declining" attendance -- a manipulation in its worse form due to the fact that from 1997 until 2004 parents like me were told by CPS teachers that the therapeutic services offered through HC/dd schools were not available because "they were working to capacity."
No statistics were gathered as to why so many children with serious disabilities and developmental delays are "homeschooled" or why so many parents do not know about HC/dd services. An even sadder commentary is how some of our children remain only a footnote in history when their freedoms are taken away while others are allowed to make history with their freedoms that are bought and sold for them. When a government places the needs of its own children into "stipulations" then it is no longer a government for the people.
Although we see our children out and about, many still exist on the margins because instead of "warehousing" their bodies in institutions, we are "warehousing" their needs in public schools burying them under paperwork created from the legislation that was put there to protect them. We are warehousing their "needs" instead of building on their ability.
Many children with atypical needs today are being "warehoused" in public schools where they are "rolled" in and out of classrooms at what is considered "appropriate" and "inappropriate" times and then used as instrument to be measured once or three times a week because of what is written their Individualized Education Plan or IEP. They are children first, not instruments to be measured.
"No Child Left Behind" legislation stole away from my daughter her right to a free public education guaranteed by The Individuals with Disabilities Education Act or IDEA laws established in 1974 by enforcing curriculum guidelines into her IEP among other things which is illegal. It also serves as the future "green light" for her to be pulled in and out of a typical classroom at someone else's will. It is this IDEA 1974 law that safeguards her rights to receive an appropriate education based on her atypical needs and "No Child Left Behind" legislation that takes this right away from her.
The Frederick A. Breyer School was a school that served kids in the community with atypical needs through their atypical classrooms; it was a school where children were allowed to be children first, not instruments to be measured. It was a school that offered therapies for children with severe disabilities to develop independent life-skills according to each child's need which takes time, patience, and focus. It has been closed by the HC/dd formally known as MR/dd Superintendent and Board and these services will be lost forever to children in our community.
When I read from e-mail transmission from a tax levy review committee member that it was HC/dd who suggested (i) closing one of three adult education centers and (ii) shifting some of the MR/dd-provided services to children onto the respective school districts; and when I became personally involved in the carnival of politics and associated business that determined where my child goes to school, how her classroom should look, and what therapies she should receive, it is at most a very sad commentary of corrupted and failed local, state, and federal government.
The Cincinnati Enquirer, Cincinnati Post, Cincinnati WCPO-TV and other television news stations refused to investigate what qualifications"Maximus," the Columbus, Ohio company, hired by the Hamilton County Tax Levy Review Committee, had to determine how special education classrooms for severely disabled children should look like and how services should be rendered to children with severe disabilities.
Furthermore, the Cincinnati media did a terrible disservice to all our children with disabilities by failing to report to the public exactly who was responsible for closing the school or asking why MR/dd administration denied this information to their clients and Hamilton County property owners by hiding it as "continuing children services" on compaign cards until after the Mental Retardation tax levy was passed and why the teacher were told not to tell the parents. Why in April in 2005, there was still discussion with PTA personnel atBreyer about options still being considered and waiting until 2 weeks before summer vacation to notify parents the school was closing.
MR/dd refused to consider the available "financial" alternatives and solutions to keeping the school open and told the commissioners that closing the school was only a matter of "inconvenience" to a few families. The media fell short of investigative reporting by refusing to look at the attempted HC/dd school closing in 1997 and why suddenly it was okay to close one in 2006 based on "declining" attendance -- a manipulation in its worse form due to the fact that from 1997 until 2004 parents like me were told by CPS teachers that the therapeutic services offered through HC/dd schools were not available because "they were working to capacity."
No statistics were gathered as to why so many children with serious disabilities and developmental delays are "homeschooled" or why so many parents do not know about HC/dd services. An even sadder commentary is how some of our children remain only a footnote in history when their freedoms are taken away while others are allowed to make history with their freedoms that are bought and sold for them. When a government places the needs of its own children into "stipulations" then it is no longer a government for the people.
Tuesday, April 15, 2008
Inclusion Solutions
Here's a website for families and friend looking for ideas about inclusion concerns:
http://www.inclusionsolutions.com/
http://www.inclusionsolutions.com/
Friday, April 11, 2008
ASSISTIVE TECHNOLOGY: CREATING POSSIBILITIES
April 30, 2008
Assistive Technology: Creating Possibilities
Register by calling Kari Edwards
513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost
Assistive Technology: Creating Possibilities
Register by calling Kari Edwards
513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost
Big Momma's Breakfast of Champions
By looking at Sarai Jackson, one would never guess her nickname in the neighborhood was "Big Mama." She was a petite, frail, and distinguished looking woman even at 88 years old. Or was she 94 or 101? No one ever knew. I didn't know about her nickname until I read it in her obituary.
She died 5 years ago on this day.
Each Saturday at 4 p.m., Mrs. Jackson left her home for about two hours or so dressed like she had just stepped off the pages of Town & Country from the early 60s. Wearing gloves, hat, purse and shoes in coordinating colors to a trim A-line double breasted, soft pastel cashmire coat, I wondered when I first moved into the neighorhood, "is she going to a country club for dinner?"
It was 20 years ago I met her personally while taking my daughter out for a stroller ride conveniently coordinating the time to coincide with her "steppin out" time one Saturday. I waved a "hello" and said a few words admiring her hat, gloves, heels, and coat. She waved back. Smiling. Never saying a word.
During the week, I saw she was out sitting in her screened porch so I stopped over to say "hello" and this time I was "invited" to come up and chat. We had many conversations over the years when she was up to it. I always started with "did you see that article about....?" and she would answer with a soft "mmm, mmm, mmm." Then, she would let go with a deep sigh and a short sermon on the stoop about what life was like when she was growing up.
One day while visiting we saw a patrol car drive by. There was some trouble in the neighborhood with the boys who lived at the house on the corner. Mrs. Jackson referred to them as "hoodlums" and "no good." I mentioned the one time I had a run in with one of the boy's friends who insisted on blaring his "boom-boom" music in the wee hours of the morning parked in front of our house.
"Mmmm, mmm, mmm. No good those boys. Up to no good. Trouble. Those boys should be in bed. It's a school night. What's wrong with that mother," she would ask, not expecting an answer from me.
I mentioned something about how hard it must be for a single parent mother working the 3rd shift, trying to pay her mortgage, insurance, and raising children without any support or back up.
Mrs. Jackson went quiet. Very quiet. Did I jumped protocol and speak out of turn? Did I offend her?
Then finally she let out a "no excuse for that. No excuse for that at all. Those boys are bad because the mother has her priorities all wrong. I raised 8 children and had a full time job. My kid's were not running around the neighborhood like hoodlums. Like the way the kids are running around today. No excuse for this generation of hoodlums. No excuse at all."
Then she went on about what it was like working in the late 50s and early 60s getting up early in the morning making breakfast and lunches for her kids and catching the bus by 8:30 to go downtown to get to her job by 9:00 a.m.
"I had breakfast for my children at the table every morning."
I don't remember Mrs. Jackson's exact words for her sermon that day but she said it was the least a mother or father could do for their child; to provide a good breakfast. To sit down together in the morning when they are very young to establish a good pattern for social development. Young enough to sit at a high chair or table because if they have table time in the morning, they'll have a good disposition throughout the rest of their life. Children need to feel that somebody is in control and that somebody is caring for them.
In so many words, Mrs. Jackson said if children can't trust their own parent to give them the basic neccessities of feeling secure, wanted, and loved, then how can we expect them to ever trust other people?
Ever since that day with Mrs. Jackson, my children have never ever gone a day without sitting down for breakfast, lunch, and dinner.
She died 5 years ago on this day.
Each Saturday at 4 p.m., Mrs. Jackson left her home for about two hours or so dressed like she had just stepped off the pages of Town & Country from the early 60s. Wearing gloves, hat, purse and shoes in coordinating colors to a trim A-line double breasted, soft pastel cashmire coat, I wondered when I first moved into the neighorhood, "is she going to a country club for dinner?"
It was 20 years ago I met her personally while taking my daughter out for a stroller ride conveniently coordinating the time to coincide with her "steppin out" time one Saturday. I waved a "hello" and said a few words admiring her hat, gloves, heels, and coat. She waved back. Smiling. Never saying a word.
During the week, I saw she was out sitting in her screened porch so I stopped over to say "hello" and this time I was "invited" to come up and chat. We had many conversations over the years when she was up to it. I always started with "did you see that article about....?" and she would answer with a soft "mmm, mmm, mmm." Then, she would let go with a deep sigh and a short sermon on the stoop about what life was like when she was growing up.
One day while visiting we saw a patrol car drive by. There was some trouble in the neighborhood with the boys who lived at the house on the corner. Mrs. Jackson referred to them as "hoodlums" and "no good." I mentioned the one time I had a run in with one of the boy's friends who insisted on blaring his "boom-boom" music in the wee hours of the morning parked in front of our house.
"Mmmm, mmm, mmm. No good those boys. Up to no good. Trouble. Those boys should be in bed. It's a school night. What's wrong with that mother," she would ask, not expecting an answer from me.
I mentioned something about how hard it must be for a single parent mother working the 3rd shift, trying to pay her mortgage, insurance, and raising children without any support or back up.
Mrs. Jackson went quiet. Very quiet. Did I jumped protocol and speak out of turn? Did I offend her?
Then finally she let out a "no excuse for that. No excuse for that at all. Those boys are bad because the mother has her priorities all wrong. I raised 8 children and had a full time job. My kid's were not running around the neighborhood like hoodlums. Like the way the kids are running around today. No excuse for this generation of hoodlums. No excuse at all."
Then she went on about what it was like working in the late 50s and early 60s getting up early in the morning making breakfast and lunches for her kids and catching the bus by 8:30 to go downtown to get to her job by 9:00 a.m.
"I had breakfast for my children at the table every morning."
I don't remember Mrs. Jackson's exact words for her sermon that day but she said it was the least a mother or father could do for their child; to provide a good breakfast. To sit down together in the morning when they are very young to establish a good pattern for social development. Young enough to sit at a high chair or table because if they have table time in the morning, they'll have a good disposition throughout the rest of their life. Children need to feel that somebody is in control and that somebody is caring for them.
In so many words, Mrs. Jackson said if children can't trust their own parent to give them the basic neccessities of feeling secure, wanted, and loved, then how can we expect them to ever trust other people?
Ever since that day with Mrs. Jackson, my children have never ever gone a day without sitting down for breakfast, lunch, and dinner.
Friday, March 14, 2008
New Rules for IDEA Meeting
Ohio's New Rules For Special Education Services- IDEA 2004
Date: March 25, 2008
Time: 7:00 pm to 8:15 pm
Location: The First Baptist Church of Mason
Sponsor: C.H.A.D.D.
Related Diagnosis / Condition: Attention Deficit Disorder
How to Register: 513-459-6080 Fee: $3.00 for non-members and free for C.H.A.D.D. members
Date: March 25, 2008
Time: 7:00 pm to 8:15 pm
Location: The First Baptist Church of Mason
Sponsor: C.H.A.D.D.
Related Diagnosis / Condition: Attention Deficit Disorder
How to Register: 513-459-6080 Fee: $3.00 for non-members and free for C.H.A.D.D. members
SECURING YOUR DREAMS
Securing Your Dreams: Legal and Financial Strategies for Special Needs
Date: April 5, 2008
Time: 10:00 am to 3:00 pm
Location: Drake Center, Level A,
151 E. Galbraith Rd. Sponsor: Arc-Hamilton CountyRelated Diagnosis / Condition: AllHow to Register: Arc-Hamilton County, 513-821-2113, ext. 113Fee: $15 (includes lunch)
CP Education Series: Assistive Technology
Date: April 30, 2008
Time: 5:30 pm to 8:00 pm
Location: Cincinnati Children's, Loc. E, 4th Fl., Rm. 353
Sponsor: Cincinnati Children's and UCP's Perlman CenterRelated Diagnosis / Condition: Cerebral Palsy
How to Register: Kari Edwards, kari.edwards@cchmc.org, 513-803-0052 / 800-344-2462 by April 16Fee: None
Date: April 5, 2008
Time: 10:00 am to 3:00 pm
Location: Drake Center, Level A,
151 E. Galbraith Rd. Sponsor: Arc-Hamilton CountyRelated Diagnosis / Condition: AllHow to Register: Arc-Hamilton County, 513-821-2113, ext. 113Fee: $15 (includes lunch)
CP Education Series: Assistive Technology
Date: April 30, 2008
Time: 5:30 pm to 8:00 pm
Location: Cincinnati Children's, Loc. E, 4th Fl., Rm. 353
Sponsor: Cincinnati Children's and UCP's Perlman CenterRelated Diagnosis / Condition: Cerebral Palsy
How to Register: Kari Edwards, kari.edwards@cchmc.org, 513-803-0052 / 800-344-2462 by April 16Fee: None
The Light at the end of the Tunnel ...
"I love my work, I love this state and I'm confident this will all work out," the state schools superintendent told The Plain Dealer Friday. "I'm not going to stop until Ohio is seen as the best state in the United States in terms of offering a world-class education." - Susan Zelman,
I've had personal conversations with Susan Zelman and I can honestly say that she is so far removed from reality when it comes to understanding the needs of children living in Ohio school systems, mainstreaming, and proficiency testing, I would go as far as saying that this system she created was ingenius at capturing how children do on test but it does not fully measure the direct application of this newly found knowledge which is keystone to learning processes.
My children, for example, score in advance levels of the proficiency tests, but do poorly explaining how they arrived at the answers outside of showing me how they figured out how to answer the question from all the practice tests.
For our children who are excluded from a individualized education based on their ability, for our children who are mainsteamed but not included, and for the ones who are given alternative assessments, it's a political white wash.
Here's the report from Cincinnati's Enquirer:
Strickland rips schools chief
Governor wants control of state education department
BY BEN FISCHER
Gov. Ted Strickland slammed Ohio's top education official Thursday, saying the independently appointed state superintendent lacks the vision to take the next step in school reform.
His unsolicited, strongly worded criticism of Susan Tave Zelman came a month after he proposed taking control of the state Education Department, a move that would relegate her to an advisory role.
Until Thursday, the governor had not publicly assessed her abilities.
"I like Susan Zelman, she's a nice person," Strickland, a Democrat, said during a meeting with The Enquirer's editorial board. "But she's not a leader, she's not an advocate, she's not a good manager.
"She's an academician, a psychometrician, a statistician. But she's not an Eric Fingerhut, a visionary leader."
Fingerhut, a former state senator, is Strickland's hand-picked higher education czar after his successful takeover of the state's network of universities and colleges last year.
Strickland continued on Zelman: "She's a very bright person who contributes a lot to education, but she's not carrying out that vision," the first-term governor said.
Zelman was traveling Thursday and unavailable to respond, Education Department spokeswoman Karla Carruthers said. Her supporters, initially stunned by Strickland's comments, rose to her defense.
Jennifer Sheets, the Republican-appointed president of the Ohio Board of Education, said Zelman's record as superintendent is outstanding. She called Strickland's comparison to Fingerhut "ridiculous."
"I certainly have to disagree with him entirely on this issue," Sheets said. "He is absolutely mistaken if he thinks Dr. Zelman is not a leader."
In his State of the State address Feb. 9, Strickland proposed creating a cabinet-level director of education who would report directly to him. This would effectively neuter, but not eliminate, Zelman's position and the state school board, which has 11 elected members and eight members appointed by governors.
Since then, Strickland has defended his proposal as a way to bring more accountability to the state's educational bureaucracy. In making his case, he had previously focused on what he called the unwieldy and splintered educational system, not the individuals currently serving.
Thursday, he radically changed course.
"I want to find someone who can serve elementary and secondary education like Eric Fingerhut serves higher education," Strickland said.
Strickland has also promised to present a major education funding overhaul proposal next year, and he said Thursday that he can't do so credibly if he doesn't have a closer tie to the department.
State Sen. Joy Padgett, R-Coshocton, said it was unfair for Strickland to compare Zelman, a veteran of the system, to Fingerhut, who only has one year under his belt running a very different higher education system.
"I have a very high opinion of both of them," said Padgett, chairwoman of the Senate education committee.
Zelman has overseen Ohio's rise from the middle of the pack to seventh among the states in Education Week magazine's Quality Counts reports, Sheets said. The superintendent also commissioned a study last year that compared Ohio to international educational standards for the first time, with some findings Strickland himself has embraced, she said.
She said the governor's comments are only his next step in ginning up support for his takeover plan after his initial attempts at persuasion yielded little support.
"It's totally unfair for him to make unfounded personal attacks in an effort just to support this desire to change the educational governance system," Sheets said.
Strickland said his plan already has significant legislative support.
A spokeswoman for state House Speaker Jon Husted, R-Kettering, declined comment.
State school board member Sam Schloemer, of Wyoming, said he suspected that Strickland's motive from the beginning was to oust Zelman. If that's true, he'll have an opportunity to do that at the end of the year, when as many as 11 seats on the 19-member board could turn over. Strickland will get to directly appoint four.
"If he wants a change in the superintendent, and he wants to discuss those things with the board, then I'm quite sure the board would be open to that," Schloemer said.
Sue Taylor, president of the Ohio Federation of Teachers, the state's second-largest teachers' union, would not say whether she agreed with Strickland's comments, only acknowledging that Fingerhut and Zelman have different styles and skills.
The union has expressed tentative support for Strickland's takeover plan.
"Perhaps he feels the need to educate the public on his assessment of the situation," she
I've had personal conversations with Susan Zelman and I can honestly say that she is so far removed from reality when it comes to understanding the needs of children living in Ohio school systems, mainstreaming, and proficiency testing, I would go as far as saying that this system she created was ingenius at capturing how children do on test but it does not fully measure the direct application of this newly found knowledge which is keystone to learning processes.
My children, for example, score in advance levels of the proficiency tests, but do poorly explaining how they arrived at the answers outside of showing me how they figured out how to answer the question from all the practice tests.
For our children who are excluded from a individualized education based on their ability, for our children who are mainsteamed but not included, and for the ones who are given alternative assessments, it's a political white wash.
Here's the report from Cincinnati's Enquirer:
Strickland rips schools chief
Governor wants control of state education department
BY BEN FISCHER
Gov. Ted Strickland slammed Ohio's top education official Thursday, saying the independently appointed state superintendent lacks the vision to take the next step in school reform.
His unsolicited, strongly worded criticism of Susan Tave Zelman came a month after he proposed taking control of the state Education Department, a move that would relegate her to an advisory role.
Until Thursday, the governor had not publicly assessed her abilities.
"I like Susan Zelman, she's a nice person," Strickland, a Democrat, said during a meeting with The Enquirer's editorial board. "But she's not a leader, she's not an advocate, she's not a good manager.
"She's an academician, a psychometrician, a statistician. But she's not an Eric Fingerhut, a visionary leader."
Fingerhut, a former state senator, is Strickland's hand-picked higher education czar after his successful takeover of the state's network of universities and colleges last year.
Strickland continued on Zelman: "She's a very bright person who contributes a lot to education, but she's not carrying out that vision," the first-term governor said.
Zelman was traveling Thursday and unavailable to respond, Education Department spokeswoman Karla Carruthers said. Her supporters, initially stunned by Strickland's comments, rose to her defense.
Jennifer Sheets, the Republican-appointed president of the Ohio Board of Education, said Zelman's record as superintendent is outstanding. She called Strickland's comparison to Fingerhut "ridiculous."
"I certainly have to disagree with him entirely on this issue," Sheets said. "He is absolutely mistaken if he thinks Dr. Zelman is not a leader."
In his State of the State address Feb. 9, Strickland proposed creating a cabinet-level director of education who would report directly to him. This would effectively neuter, but not eliminate, Zelman's position and the state school board, which has 11 elected members and eight members appointed by governors.
Since then, Strickland has defended his proposal as a way to bring more accountability to the state's educational bureaucracy. In making his case, he had previously focused on what he called the unwieldy and splintered educational system, not the individuals currently serving.
Thursday, he radically changed course.
"I want to find someone who can serve elementary and secondary education like Eric Fingerhut serves higher education," Strickland said.
Strickland has also promised to present a major education funding overhaul proposal next year, and he said Thursday that he can't do so credibly if he doesn't have a closer tie to the department.
State Sen. Joy Padgett, R-Coshocton, said it was unfair for Strickland to compare Zelman, a veteran of the system, to Fingerhut, who only has one year under his belt running a very different higher education system.
"I have a very high opinion of both of them," said Padgett, chairwoman of the Senate education committee.
Zelman has overseen Ohio's rise from the middle of the pack to seventh among the states in Education Week magazine's Quality Counts reports, Sheets said. The superintendent also commissioned a study last year that compared Ohio to international educational standards for the first time, with some findings Strickland himself has embraced, she said.
She said the governor's comments are only his next step in ginning up support for his takeover plan after his initial attempts at persuasion yielded little support.
"It's totally unfair for him to make unfounded personal attacks in an effort just to support this desire to change the educational governance system," Sheets said.
Strickland said his plan already has significant legislative support.
A spokeswoman for state House Speaker Jon Husted, R-Kettering, declined comment.
State school board member Sam Schloemer, of Wyoming, said he suspected that Strickland's motive from the beginning was to oust Zelman. If that's true, he'll have an opportunity to do that at the end of the year, when as many as 11 seats on the 19-member board could turn over. Strickland will get to directly appoint four.
"If he wants a change in the superintendent, and he wants to discuss those things with the board, then I'm quite sure the board would be open to that," Schloemer said.
Sue Taylor, president of the Ohio Federation of Teachers, the state's second-largest teachers' union, would not say whether she agreed with Strickland's comments, only acknowledging that Fingerhut and Zelman have different styles and skills.
The union has expressed tentative support for Strickland's takeover plan.
"Perhaps he feels the need to educate the public on his assessment of the situation," she
Tuesday, February 19, 2008
CP Education Classes for IEP
at Children's Hospital Medical Center
Location E
4th Floor
5:30 to 6 p.m.
Pizza and social
6-8 p.m.
Wednesday
March 5, 2008
Your Child's IEP
April 30, 2008
Assistive Technology: Creating Possibilities
Register by calling Kari Edwards
513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost
Location E
4th Floor
5:30 to 6 p.m.
Pizza and social
6-8 p.m.
Wednesday
March 5, 2008
Your Child's IEP
April 30, 2008
Assistive Technology: Creating Possibilities
Register by calling Kari Edwards
513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost
Saturday, February 16, 2008
Editorial from Cleveland Plain Dealer
Editorial: Changes atop Ohio's K-12 education bureaucracy probably wouldn't hurt
Friday, February 15, 2008
Posted by the editors at blog.cleveland.com/ post_riposte/ on 02/11/2008 at 5:15 p.m.
Gov. Ted Strickland didn't put it this bluntly in his State of the State speech, but it's clear he wants to junk the State Board of Education and the state superintendent.
That's fine with us - with a few caveats.
Strickland's plan would turn state Superintendent Susan Tave Zelman and the board into advisers. A K-12 education czar would report directly to Strickland, in an arrangement similar to the job held by Eric Fingerhut, chancellor of higher education.
Under the governor's proposal, decisions to reform K-12 education would ultimately be his responsibility - and everybody would know it.
Zelman isn't eager to take a back seat to a new Cabinet member. And her annual salary of $217,000 seems a little pricey for an adviser. If the legislature goes along with Strickland's plan, Zelman's position should be eliminated.
As for the state board, half the members already are appointed by the governor, and even the ones elected by the voters are just about anonymous.
Their lack of accountability has been evident from the board's stumbling on several key educational issues. Members have been slow, for instance, to make the Department of Education divulge information about teachers who abuse youngsters - something that is of great concern, especially to parents.
But if all of Ohio's education decisions were left to this governor, parents might find they have new concerns.
In an effort to appease supporters in organized labor, Strickland has adopted inflexible and wrongheaded positions on charter schools and school vouchers. He wants a moratorium on new charters, a ban on for-profit charters and restrictions established so the school voucher program cannot spread beyond Cleveland.
The governor's ideas in the area of school choice are nothing short of awful. Choice is a concept that has been far from perfect in its implementation, but families deserve educational options. Strickland and his aides should shut down charter schools that fail, but they should reward the ones that succeed.
Strickland could change the administrative structure of education in Ohio without doing any damage. But the General Assembly would have to keep a close watch on how such changes affect education policy and use its powers to ensure that parents, children and taxpayers are well served.
Friday, February 15, 2008
Posted by the editors at blog.cleveland.com/ post_riposte/ on 02/11/2008 at 5:15 p.m.
Gov. Ted Strickland didn't put it this bluntly in his State of the State speech, but it's clear he wants to junk the State Board of Education and the state superintendent.
That's fine with us - with a few caveats.
Strickland's plan would turn state Superintendent Susan Tave Zelman and the board into advisers. A K-12 education czar would report directly to Strickland, in an arrangement similar to the job held by Eric Fingerhut, chancellor of higher education.
Under the governor's proposal, decisions to reform K-12 education would ultimately be his responsibility - and everybody would know it.
Zelman isn't eager to take a back seat to a new Cabinet member. And her annual salary of $217,000 seems a little pricey for an adviser. If the legislature goes along with Strickland's plan, Zelman's position should be eliminated.
As for the state board, half the members already are appointed by the governor, and even the ones elected by the voters are just about anonymous.
Their lack of accountability has been evident from the board's stumbling on several key educational issues. Members have been slow, for instance, to make the Department of Education divulge information about teachers who abuse youngsters - something that is of great concern, especially to parents.
But if all of Ohio's education decisions were left to this governor, parents might find they have new concerns.
In an effort to appease supporters in organized labor, Strickland has adopted inflexible and wrongheaded positions on charter schools and school vouchers. He wants a moratorium on new charters, a ban on for-profit charters and restrictions established so the school voucher program cannot spread beyond Cleveland.
The governor's ideas in the area of school choice are nothing short of awful. Choice is a concept that has been far from perfect in its implementation, but families deserve educational options. Strickland and his aides should shut down charter schools that fail, but they should reward the ones that succeed.
Strickland could change the administrative structure of education in Ohio without doing any damage. But the General Assembly would have to keep a close watch on how such changes affect education policy and use its powers to ensure that parents, children and taxpayers are well served.
Friday, February 8, 2008
Cleveland Plain Dealer's Version of Zelman vs. Strickland Battle for Ohio Education
Zelman, state superintendent, disagrees with Strickland's proposed shake-up
Schools boss, Strickland disagree
Saturday, February 09, 2008
Scott StephensPlain Dealer Reporter
An upbeat Susan Tave Zelman shrugged off an apparent no- confidence vote from the governor and vowed to continue mov ing the state's 1.8 million-student public school system forward.
"I love my work, I love this state and I'm confident this will all work out," the state schools superintendent told The Plain Dealer Friday. "I'm not going to stop until Ohio is seen as the best state in the United States in terms of offering a world-class education."
Zelman's remarks were her first public comments since Gov. Ted Strickland, in his State of the State speech Wednesday, called for creation of a Cabinet- level director of education who would report directly to him. The new position, which would have to be created by the legislature, would relegate Zelman and the 19-member State Board of Education to advisory roles.
In his speech, Strickland acknowledged the state has moved up in national education rankings, but said the public schools system could not be run by an "unwieldy department with splintered accountability."
The announcement, and its timing, surprised some. Zelman said she was on her way to a social event late Tuesday evening when she was summoned to the governor's office. She said an aide showed her portions of Strickland's address.
"I was very surprised," she said, adding that she and the governor have not spoken since his Wednesday speech.
The bombshell also surprised State Board of Education President Jennifer Sheets.
"I have had a fairly good professional and personal relationship with the governor, who was my congressman," said Sheets, of Pomeroy. "I'm disappointed he didn't see a need to contact me ahead of time."
Zelman, who begins her 10th year as the state's superintendent of schools March 8, said she sharply disagreed with the governor's proposal, but did not take it as a personal rebuke.
"I understand politics," she said.
Schools boss, Strickland disagree
Saturday, February 09, 2008
Scott StephensPlain Dealer Reporter
An upbeat Susan Tave Zelman shrugged off an apparent no- confidence vote from the governor and vowed to continue mov ing the state's 1.8 million-student public school system forward.
"I love my work, I love this state and I'm confident this will all work out," the state schools superintendent told The Plain Dealer Friday. "I'm not going to stop until Ohio is seen as the best state in the United States in terms of offering a world-class education."
Zelman's remarks were her first public comments since Gov. Ted Strickland, in his State of the State speech Wednesday, called for creation of a Cabinet- level director of education who would report directly to him. The new position, which would have to be created by the legislature, would relegate Zelman and the 19-member State Board of Education to advisory roles.
In his speech, Strickland acknowledged the state has moved up in national education rankings, but said the public schools system could not be run by an "unwieldy department with splintered accountability."
The announcement, and its timing, surprised some. Zelman said she was on her way to a social event late Tuesday evening when she was summoned to the governor's office. She said an aide showed her portions of Strickland's address.
"I was very surprised," she said, adding that she and the governor have not spoken since his Wednesday speech.
The bombshell also surprised State Board of Education President Jennifer Sheets.
"I have had a fairly good professional and personal relationship with the governor, who was my congressman," said Sheets, of Pomeroy. "I'm disappointed he didn't see a need to contact me ahead of time."
Zelman, who begins her 10th year as the state's superintendent of schools March 8, said she sharply disagreed with the governor's proposal, but did not take it as a personal rebuke.
"I understand politics," she said.
Wednesday, January 30, 2008
Children's Hospital Advocacy & Resources Page
Can't think of going one week without using this link to look something up ...
http://www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/advocacy.htm
http://www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/advocacy.htm
Advocacy through HC/dd in Cincinnati
Hamilton County Developmental Disabilities Services formally known as MR/dd Services:
http://www.hamiltonmrdd.org/
http://www.hamiltonmrdd.org/
Memorial Inc.
The staff and volunteers have always been a great help for me when my child was very young and just beginning her education journey:
Mission Statement
The mission of Memorial, Inc. is to improve the quality of life for underserved individuals and families residing in and around Mt. Auburn, Over-The-Rhine and Corryville, through educatiional programs, group activities and support services that enable them to become self-sufficient citizens of their community.
Memorial Inc.
3000 Vernon Place
Cincinnati, OH 45219
(513) 621-3032
Fax:
(513) 559-0300
Website:
http://www.memorialinc.com/
Interest Area:
Children & Youth, Community, Education & Literacy
You may choose to: Make a Donation
Mission Statement
The mission of Memorial, Inc. is to improve the quality of life for underserved individuals and families residing in and around Mt. Auburn, Over-The-Rhine and Corryville, through educatiional programs, group activities and support services that enable them to become self-sufficient citizens of their community.
Memorial Inc.
3000 Vernon Place
Cincinnati, OH 45219
(513) 621-3032
Fax:
(513) 559-0300
Website:
http://www.memorialinc.com/
Interest Area:
Children & Youth, Community, Education & Literacy
You may choose to: Make a Donation
Hamilton County ARC
Here's the link for Hamilton County ARC ...http://www.archamilton.org/ for help with advocacy.
Saturday, January 26, 2008
Cincinnati Agenda 360
A civic engagement meeting ...
Greater Cincinnati is at an important crossroads. Our region is endowed with exceptional resources, yet there is no clear cut comprehensive picture for using them to achieve continued social progress, economic prosperity, and community building.
Please come to this meeting to make your voice be heard ...
When: January 31, 2008
Where: Hamilton County BMR/DD Support Center at 1520 Madison Road
Who: Individuals, parents/family members, providers and staff
Register with John Romer at 559-6720 or write John.romer@hamilton-co.org
Greater Cincinnati is at an important crossroads. Our region is endowed with exceptional resources, yet there is no clear cut comprehensive picture for using them to achieve continued social progress, economic prosperity, and community building.
Please come to this meeting to make your voice be heard ...
When: January 31, 2008
Where: Hamilton County BMR/DD Support Center at 1520 Madison Road
Who: Individuals, parents/family members, providers and staff
Register with John Romer at 559-6720 or write John.romer@hamilton-co.org
Monday, January 21, 2008
While You Were Way
Dear Dr. King,
Just last year, my sister came home wondering why everyone laughed at her when she asked, "Am I African-American?"
I don't understand, either, why the teacher also thought it was funny so much that she did a "all right class, let's show Lily what African American means" by asking the students to stand up if they were "African American."
The teacher thought her question was so funny, she made a point to call my Mom about it later that night. She was surprised she would say something so absurd in a classroom. To think, to ask a question in a classroom seemed out of sorts to this woman.
"Generally she's cooperative and helpful in the classroom," I heard her say as my Mom put the speaker phone on followed by a "I didn't know Lily was such a crack up."
My mom said to me quietly cupping her hand over the receiver that she could smell the teacher's peppermint breath.
My mom asked "Well ...what do you mean?" pretending not to know anything, offering the teacher her a chance for final redemption.
"Oh.... it was the funniest thing really ..." she went on ending with "she's such a sweet and cooperative kid, I was just so surprised that she would ask a question like that. Surely she's made that connection."
I don't remember exactly where the conversation went after that but it wasn't too long before my mother said, "nice talking to you and good bye." But can you imagine, Dr. King?
Can you image a child asking a question in a classroom? A question "like that?" What does it mean?
Is it so hard for a teacher to imagine a child growing up in world not knowing about prejudice or labels? A teacher who cannot imagine a child growing up in a world who doesn't see black or white? A teacher who cannot imagine a curious child exploring a world without experiencing physical barriers?
Who teacher who cannot imagine a world that embraces each other's differences instead of valuing only what we share in common?
Your's truly,
Elisabeth
Just last year, my sister came home wondering why everyone laughed at her when she asked, "Am I African-American?"
I don't understand, either, why the teacher also thought it was funny so much that she did a "all right class, let's show Lily what African American means" by asking the students to stand up if they were "African American."
The teacher thought her question was so funny, she made a point to call my Mom about it later that night. She was surprised she would say something so absurd in a classroom. To think, to ask a question in a classroom seemed out of sorts to this woman.
"Generally she's cooperative and helpful in the classroom," I heard her say as my Mom put the speaker phone on followed by a "I didn't know Lily was such a crack up."
My mom said to me quietly cupping her hand over the receiver that she could smell the teacher's peppermint breath.
My mom asked "Well ...what do you mean?" pretending not to know anything, offering the teacher her a chance for final redemption.
"Oh.... it was the funniest thing really ..." she went on ending with "she's such a sweet and cooperative kid, I was just so surprised that she would ask a question like that. Surely she's made that connection."
I don't remember exactly where the conversation went after that but it wasn't too long before my mother said, "nice talking to you and good bye." But can you imagine, Dr. King?
Can you image a child asking a question in a classroom? A question "like that?" What does it mean?
Is it so hard for a teacher to imagine a child growing up in world not knowing about prejudice or labels? A teacher who cannot imagine a child growing up in a world who doesn't see black or white? A teacher who cannot imagine a curious child exploring a world without experiencing physical barriers?
Who teacher who cannot imagine a world that embraces each other's differences instead of valuing only what we share in common?
Your's truly,
Elisabeth
Tuesday, November 27, 2007
CONTACTING ELISABETH'S MOM ...
HELLO,
PLEASE FEEL FREE TO USE THE EMAIL ADDRESS LINK ON THIS SITE TO CONTACT ME; HOWEVER, I CANNOT RESPOND UNLESS I KNOW YOU'RE A REAL PERSON.
SO PLEASE INCLUDE IN THE SUBJECT BOX SOMETHING MORE THAN "NEED HELP." TRY TO BE SPECIFIC:
"NOT SURE NAME OF SCHOOL IS FOLLOWING THROUGH ON IEP"
"QUESTION ABOUT ASD METHODOLOGIES FOR IEP"
"SCHOOLS IN SW OHIO WITH GOOD TRACK RECORD"
"LOOKING FOR INTERVENTION GROUPS IN COLERAIN"
THANKS,
ELISABETH'S MOM
PLEASE FEEL FREE TO USE THE EMAIL ADDRESS LINK ON THIS SITE TO CONTACT ME; HOWEVER, I CANNOT RESPOND UNLESS I KNOW YOU'RE A REAL PERSON.
SO PLEASE INCLUDE IN THE SUBJECT BOX SOMETHING MORE THAN "NEED HELP." TRY TO BE SPECIFIC:
"NOT SURE NAME OF SCHOOL IS FOLLOWING THROUGH ON IEP"
"QUESTION ABOUT ASD METHODOLOGIES FOR IEP"
"SCHOOLS IN SW OHIO WITH GOOD TRACK RECORD"
"LOOKING FOR INTERVENTION GROUPS IN COLERAIN"
THANKS,
ELISABETH'S MOM
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