Streams

Down Syndrome

Tuesday, September 09, 2008

Sarah Palin's promise to be an "advocate" for parents of special needs children has gotten a mixed reception. Patricia Bauer, former editor at the Washington Post and Los Angeles Times and founder of a website that offers information on special needs children, discusses the response within the community. Brian Skotko, physician at Children’s Hospital Boston, discusses the latest research into Down Syndrome.

Guests:

Patricia Bauer and Dr. Brian Skotko

Comments [41]

Jan from Upper West Side

Brian, thank you for asking the question that I'd previously posted about why Sarah would have a test to determine DS if she had no intention of aborting. Your guest doctor said it gives the family time to prepare & then celebrate at the birth. FIRST, there is risk of spontaneous abortion & other things by giving the test, so why did she bother? SECOND, I understand that the other kids didn't know Trig was DS until they noticed it themselves months after the birth. What kind of family preparation is that? I don't buy the doctor's answer in Palin's case; Sarah speaks with forked tongue.

Sep. 13 2008 09:25 PM
Alexandra

I am really upset by those people who have an agenda and spread lies continuously. Palin tripled the special ed budget, not cut it.

From Newsweek: http://www.newsweek.com/id/157986/output/print

"Palin did not cut funding for special needs education in Alaska by 62 percent. She didn’t cut it at all. In fact, she tripled per-pupil funding over just three years.

… According to an April 2008 article in Education Week, Palin signed legislation in March 2008 that would increase public school funding considerably, including special needs funding. It would increase spending on what Alaska calls “intensive needs” students (students with high-cost special requirements) from $26,900 per student in 2008 to $73,840 per student in 2011. That almost triples the per-student spending in three fiscal years. Palin’s original proposal, according to the Anchorage Daily News, would have increased funds slightly more, giving intensive needs students a $77,740 allotment by 2011.

… Those who claim that Palin cut special needs funding by 62 percent are looking in the wrong place and misinterpreting what they find there."

Sep. 10 2008 04:11 PM
brian from San Diego

I wholeheartedly agree with #34. I too have a daughter with DS, she's 8 months old, so I can also sympathize about the change in my feelings toward people with disabilities. It is a process, and involves opening your heart to the unknown and working and hoping for the best.

As far as the financial argument goes, if any one can quantify the difference we spend in this country on people with DS or other disabilities versus the ammount we spend on new and ingenious ways to kill people, I think that we could find a little room in the budget for people who have different needs.

Sep. 10 2008 01:29 PM
Kathryn Soper from Salt Lake City, UT

#32, I fail to see the courage manifest in terminating a Down syndrome pregnancy. I believe courage is shown by parents who take on the challenge of raising a child that society at large will reject.

Sep. 09 2008 10:55 PM
Kathryn Soper from Salt Lake City, UT

#33, no, McCain doesn't have any special affinity for Bangladesh. But he's a very strong advocate for adoption.

Why is it so surprising to people that Palin's perspective on Down syndrome and disability in general changed after giving birth to Trig? I used to loathe being near people with mental disabilities, and only had pity and distaste for them, until my son was born with Down syndrome.

Having personal experience with a given situation changes one's attitude and behavior. I believe that's human nature. It's impossible to predict Palin's future choices based on choices made before she experienced a major life change.

And the greatest influence Palin will have on this nation will probably not have anything to do with legislation she does or doesn't support. Rather, it will be her very presence in the public eye, and the unspoken message she sends that babies with Down syndrome are not trash to be thrown away.

Sep. 09 2008 09:47 PM
Kathryn Soper from Salt Lake City, UT

#2, every woman who conceives has the possibility of producing a child with Down syndrome. If you do your homework, you'll learn that the majority of babies with Ds are born to women in their twenties and early thirties.

I think it's interesting that people who have no experience living with and loving a person with Down syndrome consider themselves capable of advising others about the "right" decision. #30, if you'd taken the opportunity to consult with people who are actually living the reality of parenting a child with Ds, I daresay you would've gotten some very different input.

Sep. 09 2008 09:47 PM
eric

#34. We are comfortable in our decision and I wish you all the best, but kids in general are not really a burden financially, I would worry about the down syndrome adult. Being unable to care for a special needs adult is something we thought about. I really do not see this as a myth, but as my reality.

Sep. 09 2008 06:36 PM
Anna from Brooklyn

I am absolutely speechless at the level of hypocrisy and heartlessness of those comments. As I am reading them, my 4 year old daughter with down syndrome is singing and dancing to the music videos. She is alive and happy, she has tantrums, she is a pain in the butt at times, she is sweet and beautiful exactly like her little brother, exactly like every child of her age. She is bilingual. She is a child and she is a human being.
I doubt any of those people recommending abortion for people that are not going to be productive in our society ever spent any quality time with a person with disability. And how productive are you #14, #15, #23? And as for you #30, just to let you know, our daugther did not cost us so far any more money than her little brother so I don't know where you got your research done but the financial drain you're talking about is a myth.
I am pro choice, an absutely not religious and would never in my life vote for a republican. I was 28 when my daughter was conceived so I'm not an old mother either. Regular people have people with disablilities in their lives. The only difference with down syndrome is that you can see it early and get rid of them...how convenient huh! I bet you all can't wait for the miracle test to screen for autism in the womb because what an epidemic and an drag on society that is...

Sep. 09 2008 04:42 PM
Sarah from Queens

To #28- I think it's unproductive to talk about WHY the Palin family chose to have their baby and not terminate it. In general, I don't think it's fair to ask why she even got pregnant in the first place. It happens, and it's none of our business, it's her choice and not our place to judge her for having a baby.

Anyway, I think it IS important to think about how Trig Palin's life is going to be affected by his disability and keep in mind that Trig will, for the most part, be supported by his family- his parents and all his siblings throughout his life. There's also a financial stability & comfort that he will undoubtedly have. He won't necessarily be using all of the public programs & services which millions of people with developmental disabilities need access to, and that their family members rely on to help them out.

Just because Sarah Palin's son has downs doesn't mean she's an automatic advocate, just as John McCain has an adopted daughter from Bangladesh doesn't mean he's automatically a goodwill ambassador to the country.
It makes me sick that she is using her children as examples of her humanity.

Sep. 09 2008 04:38 PM
O from Forest Hills

Eric,

I admire your courage and think that is great you did what works for you. I think we all need to be more like that. Our lives are what we make of them and no one will stand in judgment of that now or ever.

Thank you for sharing your story. I think I would do the same as you did if faced with similar circumstances.

Sep. 09 2008 02:23 PM
eric

I will add this to my previous post. Dr. Brian Skotko mentioned that Down Adults live longer lives. Well that is all fine and good except if our child was born with Downs and I died around the age of 70 that would mean that our child would be around the age of 25. Who is going to take of the special needs adult then? So a lifetime of institutions is what Dr. Skotko recommends? No one would be able to look out for the best intentions of the special needs adult. Because that is what would happen, my family being rather small and I doubt my brothers and sister would take care of my special needs adult and they might not even be alive to do so.

Sep. 09 2008 02:08 PM
eric

My wife and I had a down syndrome fetus. We terminated the pregnancy. We do not regret our decision and our choice was made easier by the fact that everyone we talked to Doctors, friends, family supported us and told us we were making the right decision. The genetics conseler said it best in our wavering whether to have a aminio or not,
"I would have the test, I have seen the pain when families do not and have a down baby". I will only address the practical and not the personal decision by saying if we had kept the baby it would have ruined us financially. Yes as harsh as this sounds it is one of the things that you think about when you are faced with this. To say so otherwise is being dishonest. There are many thoughts that race through ones mind, but never once did I think it was the wrong thing to do and neither did my wife. It is sad but I am glad we had a choice something that A McCain/Palin government would take away.

Sep. 09 2008 01:37 PM
mc from Brooklyn

Agree with Will #27, very telling indeed. Obviously this candidate brings out the worst in people.

I hesitate to weigh in on the wisdom of having a DS child or allowing one's self to become pregnant after age 40. It is so easy to cast ourselves as judges and executioners.

However, the Repub party in general has a poor record of being on the side of anyone who is disabled or has special needs. The Supreme Court is no better. If we had the kind of support we need for these people we would not be having this argument.

Sep. 09 2008 12:30 PM
Michelle from Brooklyn, NY

It is a known fact that the chances of a child developing down syndrome significantly increase after age 35. Instead of debating whether or not Palin should have HAD this child, why are we not debating her irresponsibility of CREATING this child in the first place? If she wanted a 5th child when she already had the enormous blessing of having 4 as it was, why did she choose to create a child she knew would very likely be born disabled rather than adopt a child from the thousands of children who already exist and desperately need a loving family? Terminating her pregnancy (or any) after learning that the child would be disabled would be even more absurd. Is this really the society we live in? If a child is not going to be born in society's view or "normal" (perhaps as a result of the mother's own irresponsibility in the first place) we terminate it?? We take no personal responsibility for our actions? For the lives we have chosen to create (or for our irresponsible actions which have resulted in this creation of a life)?? And the person who wrote in suggesting that these children should be terminated because of the burden they bear on society?? YOU HAVE GOT TO BE KIDDING ME! We have got to stop and take a look at the direction we are heading with this... another Hitler Arian nation era? Are there any basic ethics and respect for humanity left?

Sep. 09 2008 12:03 PM
Will from Oakland

It's telling they had to begin here with deleting the vicious comments, regarding Palin no doubt. The liberal hypocrisy and moral facade.

Sep. 09 2008 11:57 AM
Seth from Astoria

thanks 24, just read that. Just what I was wondering.

Sep. 09 2008 11:51 AM
Seth from Astoria

My Great Uncle (Mom's uncle) was born with Cerebral Palsy, and severe Mental Retardation. The then doctors said he wouldn't live past 7 years old. He did die a few months ago at the young age of 78, out-living all the brothers and sisters who took care of him. He was a ward of the state and died in the nursing home we had to put him in. The big thing with us wasn't love, it was financial, and having to prove that he is unable to hold a job in normal society, to keep him a ward of the state. He couldn't read or write, he signed his name with an X, but could sometimes write TOM with help. Would Sarah Palin in the white house help these people like my uncle and the family members who are taking care of them.

Secondary, She has had a child with DS for 5 months now. Was she prenatally screened? Alot of my friends with her religious views don't believe in that king of screening. They only want to know healthy or not, no gender or other issues. Just Heartbeat and growing.

And what were her policies before she herself was affected. A test of her merrits would be how she acted before she herself had the child, not how she acted after.

It's all convenient to say "Oh, she has a child with Down Syndrome, she's a great Candidate." But....

I do hope that her being a candidate will help bring the subject to national attention, even if I don't think that it should win her the election.

Sep. 09 2008 11:50 AM
C from Brooklyn

Sarah Palin CUT FUNDING for special needs programs in her state by 62% when she was gov. of Alaska. Her baby Trig has just recently changed her tune.

Sep. 09 2008 11:47 AM
O from Forest Hills

People with special needs children in general may stay married but they may not be happy. That can put a lot of stress on a marriage especially if they settled to begin with and weren't happy, it can bring out the best and worst.

People staying married is not a reflection of the happiness of the marriage.

Sep. 09 2008 11:44 AM
ppv1 from NYC

I'm a little concerned how Sarah Palin is suddenly the poster person for knowing what Downs families truely experience given that she's the mother of a child with Downs for a few months and most likely has 24/7 care on hand. I have family who's raised/lived with a son Downs for 30+ years and know a lot more about living a family lifestyle with way more than Sarah Palin. If she's geniune about her concern for improving the lives of families with disablities, can we ask HER what she would do and not assume that she has a complete understanding of what such a lifestyle entails!

Sep. 09 2008 11:43 AM
Cathy Towle from Brooklyn

Would you speak about the barriers to care and rights like education, mobility, health care, and services that currently exists? I know it is difficult across the spectrum, from Downs to learning differences to mental illness issues, even though the laws are on the books. For example getting LD services is very difficult, even though it is supposedly supposed to be covered by the state. Also it's still a stigma to have any of these problems. It does extend into a class issue and I wonder what awareness Sara Palin, a Republican would bring to that?

Sep. 09 2008 11:42 AM
Alden from Inwood

All of the positive factors that the male guest just listed are correlations with Down's syndrome that he is mis-representing as CAUSED BY Down's syndrome.

Individuals who are less likely to abort a fetus with Down's syndrome are less likely to divorce for similar religious reasons. A child with Down's syndrome does not have a "protective" effect on a marriage.

Sep. 09 2008 11:42 AM
savitra from manhattan

perhaps the families of special needs kids will have an "advocate" in the white house, but i can't imagine the republican administration giving more than a few crumbs financially and a little (or a lot) of symbolic but essentially useless acts. what does your guest believe will actually come of palin's "advocacy?"

Sep. 09 2008 11:42 AM
Gabriel from NYC

Thanks for that Brian. Choice means choice.

Sep. 09 2008 11:41 AM
O from Forest Hills

#16 Absolutely correct.

Eugenics was big in the 20s

Sep. 09 2008 11:41 AM
jayackroyd from Manhattan

What makes Ms Bauer think that there will be any more commitment by a McCain administration to support services for the disabled? There is no evidence that this would happen, and plenty of history in Palin's governing record that would indicate otherwise.

Sep. 09 2008 11:41 AM
Prof. Hurson from westchester

Didn't Hitler begin with eliminating the retarded and disabled because they were drains on the economy?

Sep. 09 2008 11:40 AM
Brandon from Brooklyn

Will Sarah Palin pledge to not have any children if she does get to be VP? She should.

Your speaker mentioned "long, healthy, and productive lives" of Down Syndrome people. Please explain "productive" in that sentence.

Sep. 09 2008 11:40 AM
the truth from Atlanta/New York

It was a reckless decision on Palin's part. God Bless any child brought into this world but why risk it?

Sep. 09 2008 11:38 AM
Peter from Flatbush, Brooklyn

Do republicans believe in genetic variation? All kidding aside, I wish Trig Van Palin all the best in his future.
He has a middle name Van...im not making that up - Van Palin (insert David Lee Roth yell here)

Sep. 09 2008 11:38 AM
Mary

Hugh (#9) is right. I'm trying to track down a source right now, but she cut funding for kids with disabilities (as well as pregnant teens) early on as a governor.

What have we come to?

Sep. 09 2008 11:37 AM
CB

Sarah Palin's down-syndrome baby was just born a few months ago; prior to that, she cut funding for special education in Alaska (a veto which was then overturned by the Alaskan Legislature). So how seriously is she taken as an "advocate" for people with special needs? Is she seen as an "instant advocate" just because now she has a special needs child?

Sep. 09 2008 11:35 AM
Hugh from Brooklyn

Sarah Palin was _on record_ opposing programs for children, for those with disabilities _until_ she was both a parent with a disabled child and running for VP.

Moreover, she, McCain and the overwhelming majority of Republicans have opposed public assistance for the disabled, opposed public assistance for special needs children and adults.

To pretend that Palin will change things is revolting lie.

Sep. 09 2008 11:34 AM
Angela from Manhattan

I am distressed by the idea that these children should not be allowed to be born. This is a decision (and a choice) that only the parents can make. I am fully in favor of providing services for these children to enable them to live their lives to the fullest, to be valued and loved, and to contribute to society to the best of their abilities. I suspect, however, that Sarah Palin's idea of "advocating" for these children is to make sure that other parents do not have the ability to choose whether or not to bear children with disabilities. I am skeptical about whether she will be in favor of spending money for services ("big government", "overregulation", etc.); outlawing abortion may well be her primary goal.

Sep. 09 2008 11:33 AM
Seth Ginsberg from Williamsburg, BKLN

As a conservative she would never have cared to fund special programs for families and children with disabilities. Only when something happens to their own families do Republicans/Conservatives care about social programs.

Sep. 09 2008 11:33 AM
Susan from Kingston, New York

I cannot help but think that Sarah Palin always needs to be the central of attention. I, too, am from a generation that warned getting pregnant after your forties increased the possibility of having a child with down syndrome. Palin already had four healthy children. Why did she put herself in the position of getting pregnant again? Why didn't she take the responsibility of getting her tubes tied or using birth control? I really think this speaks volumes about her.

Sep. 09 2008 11:33 AM
O from Forest Hills

I don't like Sarah Palin and think she will be a very bad choice because of her ethics abuse of power and she is already lying about earmarks and that she didn't support the bridge to nowhere.

We need to advocate for people with disabilities, I agree, but that doesn't mean we want Sarah Palin to be VP.

Sep. 09 2008 11:32 AM
KC from NYC

Wait a minute. Is Palin actually an advocate? I don't think it's safe or responsible to assume that she is. What is her voting record on this?

Sep. 09 2008 11:30 AM
Amy from Brooklyn

Please discuss how a child with disabilities is a known liability for society. Special education, group homes and medical care are very expensive propositions, and it's unlikely that the parents of the child (Palins or not) will bear the cost of very much of it.

Fiscal responsibility, smaller government and reduced social programs are Republican core issues. How do these square with deliberately giving birth to a disabled child?

Sep. 09 2008 11:07 AM
t. ann from new jersey

My generation was told that anyone having children over 35 years of age would have a possibility of having a Down Syndrome child. To subject the innocent child to such reckless attitudes is unforgiveable. She already had four children, she didn't have to have one in her forties. She is hypocritical and insensitive. She is not family oriented or a real mother.

Sep. 09 2008 10:39 AM
Brian Lehrer Show Producer from Varick St.

A few comments have already been removed from this thread. Remember to keep your comments civil and relevant to the discussion taking place on the air. Thanks!

Sep. 09 2008 10:27 AM

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