Mom: "Medicare Saved My Family"

Special thanks to Monique Ruffin -- a mother, author, life coach, and advocate for her son, who has Down syndrome -- for today's post. I spotted her emotional post on the Mom.me website, where she and another mother wrote about "What Health Care Policy Means for Moms." Click to read a counter-argument from a mother who does not support the Affordable Care Act. Monique writes:

"When my son was born with Down syndrome, I was shocked by all the new concerns our family faced. Our hearts were happy and heavy at the same time. We were new parents to a beautiful baby boy whose future was uncertain. After spending the first week of his life in the neonatal unit of the hospital, we brought our son home to begin our journey of loving and supporting him as he grows into his greatest potential.

"We quickly learned to take advantage of the support available from various state and federal agencies. Within weeks we were pointed to our local Regional Center, a federally and state funded organization designed to support children and families caring for people with special needs. By the time my son was 4 weeks old, there was someone visiting my home weekly to assist me and teach me how I can support my son’s development. I was directed to an occupational therapist, a speech and communication therapist, a behavioral therapist, and an eating specialist to help me understand and overcome my son’s challenges. The center also offers classes for parents, including how to potty train children with special needs and how to teach special needs kids to read. The information and resources are invaluable and come at no cost to the families of the children.

"My entire life revolves around my ability to receive the services and tools to support my son, who at 5 years old is thriving—largely because of the assistance and guidance of the Regional Center’s staff and services.

"If the Romney/Ryan ticket wins this upcoming election and we suffer more cuts to the services that like those of the Regional Center and Medicare, what will happen to families like mine? The Ryan cuts—between 50 percent and 75 percent—to Medicaid would drastically decrease the federal dollars. These federal cuts would likely force the states to pick up the cost or drop nearly 19 million Medicaid recipients, including the very poor, seniors, and pregnant mothers. Putting millions of families like mine, who are not able to absorb the high cost of medication and treatments, in dire straits. On the other hand, the Obama plan works with health care providers and hospitals to cut their cost. Obama’s plan also creates a health care mandate for all citizens bringing more people into the health care pool.

"It was my family’s need for support and my connection with other families in far more severe conditions—like a single mother with four autistic children—that inspired me to start writing and getting involved in politics like health care reform. Unless you have a child or close family member with special needs, and have faced the onslaught of medical treatments and therapies he or she requires, you don’t understand how these programs help us stay afloat emotionally, mentally, and physically.

"My heart nearly jumps out of my chest when I consider what will likely happen to our babies if the Medicare proposals of the Romney/Ryan ticket are implemented. I am asking myself, 'Are we are nation that wants to stand by as millions of children are denied access to services that not only create possibilities for them, but also actually save their lives?' It is in situations like this that government is needed to assure that all our citizens have access to services that their lives depend on. Such resources would otherwise go only to those with financial means. Is this who we are? I know firsthand of what President Clinton spoke of, but I also know firsthand the progress of a child whose life has an abundance of possibilities, created directly by the love and the care we receive from these life-saving social services."

Follow Monique on Twitter at @moniqueruffin and read her other posts on Mom.me and the Huffington Post.

National Down Syndrome Advocacy Day, February 2010

The National Down Syndrome Society has announced the first annual Down Syndrome Advocacy Day will be held on Capitol Hill Feb. 24-25, 2010. So technically, I guess it's "Advocacy Days" plural. Advocates will meet with elected representatives, learn advocacy tips, and connect with Down syndrome advocates from around the country. For information, visit the National Down Syndrome Society's website. You can also sign up for action alerts on Down syndrome.

Republican, Female, Pro-Life, Disability Champion

Meet a pro-life Republican woman from the Northwest with a child with Down Syndrome who's emerged as a leader in disability policy. No, not Sarah Palin, whose recent actions seem to be aimed at advancing her personal career.

A recent post from Patricia Bauer's great blog linked to an article in the Weekly Standard profiling Rep. Cathy McMorris Rodgers of Washington State, a pro-life Republican and a powerful champion for people with disabilites. The mother of a boy with Down Syndrome, Rep. McMorris has launched the bipartisan Congressional Down Syndrome Caucus. Read about her.

Use of "R" Word Draws Apology from Bill O'Reilly

You read that right. Someone on "The O'Reilly Factor" said something offensive (no surprise) and then -- under pressure -- Bill O'Reilly acknowledged the comment was offensive. In a comment about the economic stimulus package, Dick Morris scoffed at President Obama, saying, "What he didn't quite explain to me -- and maybe I'm a little retarded about this -- is how are you going to get banks to give people car loans when the government is elbowing them aside?"

When this show aired, actor John C. McGinley of the TV show Scrubs, who has a son with Down Syndrome, was at the Special Olympics Winter Games, and he and several Special Olympic youth delegates let O'Reilly know how they felt about it. Watch their video.

O'Reilly heard them loud and clear. On his show, he said, "...McGinley...and the Special Olympics people contacted us objecting to the word 'retarded...' We understand that word stigmatizes millions of people... we are sensitive to the point. Shouldn't use that word." Read Tim Shriver's column on the incident.

Palin Opposes Help for Developmentally Disabled

On Monday in Colorado, Gov. Palin had an opportunity to fulfill her promise to be an advocate for people with disabilities. Instead, she expressed her opposition to a ballot initiative in Colorado to eliminate the waiting list for state services. The initiative is supportive by many Republicans, including the state's First Lady.

Palin spoke out against a Amendment 51, which would raise the sales tax by one cent on every $10 spent for the next two years to help serve 12,000 people on a waiting list to receive state services. These children and adults -- with autism, Down Syndrome, and other developmental delays -- are waiting for services like home nursing care and job training.

Frances Owens, wife of former Republican Gov. Bill Owens, says compassionate conservatives should support helping people with developmental disabilities because it's a moral issue as much as a fiscal issue. Palin disagreed.

Googlers Rush to Fact-Check McCain's Autism Claims

Because of last night's debate, this blog has had more visits than any other day since I started it on Sept. 7. Most of the recent visits are from Google searches, and many people are searching similar terms:
- sarah palin's connection with autism
- what is Sarah Palin's connection to autism?
- trig palin autism
- palin autism facts
- mccain down syndrome is not autism
- mccain says palin's child is autistic?
- does palin's kid have autism?
- palins kid downs or autistic

So if you're one of the people wondering, "What is Sarah Palin's connection to autism?" here's a short answer. Gov. Palin has a 6-month-old son with Down Syndrome, not autism. She also has a nephew who has autism. That's the extent of her expertise in this area, but during the debate, McCain said she knows more than "almost any American that I know." Of course, this is the same guy who last week called her "uniquely qualified" to cure autism.

Obama's Positions on Disabilities: An In-Depth Look

Several readers have requested more detailed information about Sen. Obama's stance on disabilities, so here's a third-party analysis that goes beyond his position papers. Way back in April, Michael Berube -- a Penn State professor who has written several books on disabilities, civil rights, education, and politics -- compared the plans of Sens. Obama, Clinton, and McCain, focusing mainly on Obama and Clinton. His article is titled Disability and Democracy. Of course, Hillary Clinton's positions at this point are less relevant, but the juxtaposition of their plans provides valuable context. This is very detailed -- and by detailed, I mean 2,500 words. But if you really want to delve into the issues, this is a great place to start.

Ironically, Berube starts his article by saying he wrote it because: "(a) no one knows that the candidates have policy positions on disability and (b) policy positions on disability are not as important as flag pins." At the time he wrote that, Berube, who has a teenager with Down Sydrome, never could have imagined how prominent these issues would become in this year's election.

Christopher Reeve & Sarah Palin: A Father Makes a Case for Stem Cell Research

Stem cell research is an emotional and often divisive issue that I wasn’t going to raise until I came across this excellent post from Don Reed, sponsor of the Roman Reed Spinal Cord Injury Research Act of 1999 and founder and co-chair of Californians for Cures. The Roman Reed Act was named for his son, who at 19, broke his neck in a college football game and was paralyzed from the shoulders down.

This legislation helped created the nation's first state-funded embryonic stem cell research, and Don Reed writes: "Today, we have hope. But it would all be swept away by Sarah Palin. Embryonic stem cell research would quite literally become against the law if Sarah Palin and the GOP get their way. The official Republican platform calls for the complete prohibition of embryonic stem cell research, both public and private; even George Bush did not take such an extreme position.

"Not only paralysis cure is at risk. We are fighting for relief from cancer, which killed my mother and older sister. Embryonic stem cell research is crucial in the battle against Alzheimer’s, multiple sclerosis, stroke, diabetes, blindness -- and Down Syndrome. In England, where the government supports it, embryonic stem cell research led to a clearer understanding of the causes of Down Syndrome, an important step towards cure."

Reed also points out that scientists overwhelmingly support stem cell research. Just recently, inspired by Christopher Reeve's advocacy, a bipartisan bill was introduced to expand stem cell research policies. And 518 health organizations, patient advocacy groups, research universities, scientific societies, religious groups, and other interested institutions and associations supported it. On the other side, opposing the legislation, were just 17 groups -- all of them conservative religious and ideological groups. I'll list those 17 here, but for the whole list of 518, you'll need to visit Reed's blog post and scan through about 14 pages of organizations like the American Medical Association, the National Down Syndrome Association, the American Academy of Pediatrics, AARP, the ARC of the United States, and more, and more, and more.

17 opposed:
National Right to Life Committee
U.S. Conference of Catholic Bishops
Family Research Council
Christian Coalition
Concerned Women for America
Focus on the Family
Christian Medical Association
Eagle Forum
Traditional Values Coalition
Southern Baptist Convention
Susan B. Anthony List
Republican National Committee for Life
Cornerstone Policy Research
Culture of Life Foundation
Religious Freedom Coalition
Coral Ridge Ministries
Center For Reclaiming America

And now you can add to that list Gov. Palin, our potential vice president (who recently claimed that Sen. McCain would put her in charge of innovative research to find cures for diseases). I know this is a sensitive ethical issue -- but if we are serious about finding cures, I'm more inclined to listen to 518 expert organizations that do research and seek cures for a living rather than 17 religious/ideological organizations that want to impose their beliefs on the scientific community. What about you?

The GOP and the Disabled

Tom's a dad with two kids -- one with autism and Down Syndrome. I recommend his blog, "Random Thinking," and love his slogan: "The windshield was broken, but I love the fresh air."

Tom has a new post called "The GOP and the Disabled" that examines McCain's record.

Working Mom with a Child with Down Syndrome: "I Want to Shriek"

In the Phoenix New Times, Amy Silverman writes eloquently about raising three children, including one with Down Syndrome, in McCain's home state. And she explains why "As a Working Mom with a Child with Down Syndrome, Sarah Palin Makes Me Shriek." She says of her 5-year-old daughter:

"Sophie's one of the smartest kids with Down Syndrome her teachers have ever seen, but the reality is that she'll never be completely independent. And if something were to happen to me and my friends and family, Sophie would have to rely on the kindness of strangers -- namely, the government. I don't know if Sarah Palin would create a safety net strong enough to catch Sophie."

She adds: "Just last month, I met a mother with a 6-year-old son with Down Syndrome. He's pretty much never had any therapy at all; he's not speaking, he isn't potty trained. The mom gave up after someone told her there was a waiting list for services (not true) and several of her calls went unreturned. All you need to do is drive to the center of any large city in America and watch homeless schizophrenics push shopping carts to see the effects another social conservative — Ronald Reagan — had on another disenfranchised group, the country's mentally ill."

McCain's Health Care Tax Increase

When you consider the issues that impact parents raising children with special needs, health care is pretty high on the list. In direct contrast to the McCain-Palin soundbite about being a friend to these parents, he is proposing a tax on health benefits for the 71 percent of Americans who have insurance through their employers.

Joe Klein explains it pretty simply: "This plan will do little or nothing for those who do not have insurance now -- unless they are young and healthy -- and it may well hurt a fair number of workers, especially unionized workers, who get gold-plated benefits from their employers. It will certainly do nothing for families with members who have pre-existing conditions or children with special needs."

HERE'S MORE (SEPT. 12):
This blogger on Stand Up for Health Care asks, "Would Sarah Palin Be Covered Under McCain Plan?" She notes that insurance companies see autism, Down Syndrome, and other chronic conditions as profit-killers, and McCain's plan would allow them to keep denying services.

"...Passed Around Like a Football"

From the associate editor of the American School Board Journal, who's covered special-needs education for 12 years:

"...I found myself in a conversation with four other women about balancing work, child care, and how to maximize a maternity leave. One of the women has a 9-month-old child, three of us are pregnant, the fifth is a pediatrician. I didn’t know any of their political affiliations, but I quickly learned that they were not impressed with Palin....

"I kept coming back to my conversations with parents of children in special education, and the sacrifices they made -— sometimes, they didn’t have a choice -- in their careers and personal lives to raise a child with special needs. We all know the early months and years are critically important to administer therapies and interventions that can help a child’s development, and seeing images of Palin’s 5-month-old baby being passed around like a football at the GOP convention convinced me that she doesn’t understand the responsibilities of parenting a special-needs infant or the responsibilities of being vice president."

Trig a Political "Prop"?

Readers Have Opinions...
Lots of News Blaze readers react to Robert Paul Reyes' op-ed "Sarah Palin is Exploiting Trig, Her Son With Down Syndrome," which I linked to previously. In response to these comments, Reyes clarifies: "My main objection is not that Palin lugs her baby around on the campaign trail, but that she holds him up like a prop."

Yes, They Exploited a Disabled Child. But What Great PR!

As a communications professional, I say "bravo" to this manufactured "news." As a voter, I say "shame on you" for deceiving Americans with this manipulative PR stunt -- featuring the exploitation of a girl with Down Syndrome. In short, after Sean Hannity featured a caller who described meeting McCain and Palin during a campaign stop. The next day, that same caller just happened to get through to Rush Limbaugh's show and even sent Rush photos of the candidates posing with his daughter with Down Syndrome. Politicians have sought out babies for photo ops for years -- I guess Palin's making an extra effort to find the ones with disabilities.

In the Huffington Post, former radio host Taylor Marsh says, "When Hannity has a caller on, then that same caller suddenly and miraculously appears on Rush's show, which evolves into a big PR event, it's not by accident. Manufacturing these events is what the right-wing does best. Using a Down Syndrome child to help their candidate get votes is just their latest low."

Sarah Palin: Lipstick or Lip Service?

Blogger Emily Elizabeth, who has a 4-year-old daughter with Down Syndrome, has written a well-crafted analysis on Gov. Palin's statements, record, and positions on issues affecting people with disabilities.

Reacting to Gov. Palin's mocking of Sen. Obama's support for government programs, Emily says, "I fail to understand how a candidate who disavows Big Government will be able to advocate successfully for the disability community -- a community that has historically lobbied for more government, not less. The disability community has spent decades trying to pass more legislation protecting the rights of those with disabilities; to create more publicly funded programs to provide support of and access to those rights; and to increase budgets allocated to self-sufficiency programs."

About Gov. Palin's promise to be a "friend" for special-needs families, Emily says, "So Sarah, if you are the pitbull in lipstick you say you are, put the lip-service away and bring it on. Because we need more than a friend. We need an advocate."

If any of the candidates want to help people with Down Syndrome, they should take a look at the National Down Syndrome Society's legislative priorities. These are the real issues and programs that need attention -- and specific plans.

Good Backgrounder on Down Syndrome

Journalist Patricia Baer offers an insightful Q&A about Down Syndrome and the impact Gov. Palin's experience may have on our nation's policies. It's an objective, balanced look at a lot of medical and social issues.

Question 7: Since John McCain picked a running mate who has a child with a disability, should we assume the McCain campaign is going to make a lot of expensive promises to the disability community?

Answer: That doesn't seem likely. Advocates for people with disabilities and their families tend to be looking for universal health care and adequate funding for Medicaid, Medicare, and Social Security -- not the traditional domains of the Republican Party. While the Obama campaign website has an extensive section devoted to issues of concern to people with disabilities, the McCain campaign site does not.