Writing in the Rocky Mountain News, parent Renee Beauregard calls on opponents of Amendment 51 to come up with the money to fund basic services for adults with intellectual and developmental disabilities in Colorado. The measure, which was defeated at the polls last week, would have raised the sales tax by a fraction of a percent to eliminate the state’s waiting list for services.

The defeat of Amendment 51 does not mean this enormous problem is going away. To those of you like Rep. Doug Bruce, Rep. Kevin Lundberg, Jon Caldara, Mark Hillman, and the anonymous anti-tax groups and others who said that Colorado simply needs to “reprioritize” where it spends its money and redirect funds to help these people, I am going to call upon you now. Because you believe that Colorado has this money somewhere, and because you made a concerted effort to help defeat Amendment 51 through your words, I look to you now to help find that money. Instead of just saying “no,” please begin to ask the question “how.”

By Jane E. Brody in the New York Times:

It’s estimated that between 20 million and 50 million family members in the United States are serving as caregivers to people who are unable to care for themselves, providing an estimated $237 billion in unpaid services each year.

A recent report from the Johns Hopkins Bloomberg School of Public Health found that most of these people have more than a full-time job taking care of their loved ones, yet fewer than 5 percent of them used caregiver support groups or respite care. Studies have also found that the stress of caregiving can increase a person’s risk of depression and anxiety, and result in a greater incidence of hospitalizations. An excerpt:

… Family caregivers must be emotionally prepared for outbursts from patients who, in anger or frustration, may accuse them of not doing enough or not doing things right. The best response is to ignore the charges and simply say, “How can I make you more comfortable?” But there are days when even the best caregiver cannot muster the best response. Those are the days to rely on whatever network you have to give yourself a break.

John Loudon, wife adopted son with Down syndrome

From the St. Louis Post-Dispatch:

Republican Missouri state senator John Loudon and his wife are the adoptive parents of Sammy, a little boy with Down syndrome. The couple, who have deep roots in the anti-abortion movement, are also at the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities, and the type of information about Down syndrome that new or expecting parents are getting from their doctors.

Last year Loudon pushed through a state law, named for his son, that requires medical professionals to provide accurate information on the outcomes of people with Down syndrome and inform mothers with a Down diagnosis of adoption resources.

Some physicians and abortion rights activists worry that “Sammy’s law,” as well as the recently approved federal Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act, could interfere with the privacy of the doctor-patient relationship.

From the Seattle Post-Intelligencer:

Self-employed real estate broker Robert Ott laments the loss of behavioral therapy for his six-year-old son with autism as the slumping economy leaves him unable to afford treatments. Ott says he continues to sell belongings and hustle work as credit lines evaporate, home sales plummet, and clients lose financing, but cutting therapy became necessary as his income dropped drastically.

The family says the loss of therapy has meant that their son, who speaks less than 50 words, has increasingly struggled at school. Autism treatments can cost more than $60,000 a year and aren’t covered by insurance.

His parents credit the therapy they can no longer afford for those 50 words. They worry the clock is ticking, and Aaron will lose those gains because he’s at the tail end of years when, experts suggest, autistic children make the most progress.

“That is what we stay up at night talking” about, said Robert Ott, who volunteers for Autism Speaks and has testified in Olympia, seeking better insurance coverage of autism therapies. “Every day he is a day older.”

Guest commentary (exclusive to PatriciaEBauer.com)

By Paul K. Longmore

On Friday, Republican vice presidential nominee Sarah Palin delivered a talk on “special needs children” that’s being described as her “first major policy speech.”  (“Palin’s Speech on Children with Special Needs,” October 24, 2008.)

As someone who grew up with a significant disability and faced bias and discrimination, I commend her for affirming the value of disabled children’s lives.  Unfortunately she also indulges in a sentimentalism that undermines disability rights advocacy.  But what’s most significant in this speech is her discussion of public policies.  This is important to examine because, according to NBC News, some parents of kids with disabilities are “flocking” to her campaign events.  Desperate to get politicians to pay attention to their difficult family situations, they are looking to her to be, as she promises, “a friend and advocate” tasked by John McCain to make “special needs children” one of her primary “missions.”  Those parents—not to mention tens of millions of other voters with and without disabilities who are concerned about disability issues—want to know what policies a McCain-Palin or an Obama-Biden administration would pursue.  So, what policies is Palin proposing, and what is her track record as an advocate?

In her speech, Palin said she would discuss “three policy proposals.”  Her explanations of them turned out to be vague and unspecific.

I’ll take the third one first.  It is the vaguest.  She promised to “reform and refocus” the Vocational Rehabilitation Act, “modernizing” it so that “we can better serve students with disabilities in our high schools and community colleges.”  What this means specifically is anybody’s guess.

Her first proposal has gotten the most attention: a McCain-Palin administration would give parents “choices” about what schools, whether public or private, they want to send their disabled children to.  Apparently their administration would establish a voucher program.

(more…)

From the New York Times, a feature on a Chappaqua, NY, couple who created a unique bar mitzvah ceremony to celebrate the life of their son. Thirteen-year-old Jarrett Rattner has an undiagnosed disability and doesn’t walk or talk.

In the process, parents Brian and Jaclyn Rattner drew some new conclusions about the meaning of disability within the context of religious faith. The Rattners don’t consider themselves religious, but Mr. Rattner said they were moved by the perspective of an Orthdox rabbi they consulted. An excerpt:

“He explained that kids so handicapped are actually on a higher plane than you or I,” Mr. Rattner said. “We’re put on earth to perfect ourselves, and most of us have so much to do. But there’s not much they can do, they’re nearly complete. A couple of little tweaks and they’re ready to meet God.”

(more…)

Writing in Parenting Magazine, Connecticut writer Hallie Levine Sklar tells how she came to accept her four-month-old daughter Johanna.

She and her husband Jamie had been “ambivalent parents,” self-absorbed and career-driven. When they found out after Johanna’s birth that their baby had Down syndrome, they were sure they wouldn’t be able to handle it.

But as time went by, they fell in love with their baby and realized that they had nothing to fear — “other than outdated stereotypes.” An excerpt:

For now, we’re taking life day by day. And while my days are filled with coos and giggles, sometimes at night, after she’s asleep, I find myself searching the Internet for information about Down syndrome. What I read fills me with dread: talk of increased risk of childhood leukemia, limited job opportunities, early cognitive decline, shortened life spans. It’s at these moments that I race into Johanna’s nursery and pick her up. As I feel her body, warm, plump, and soft against mine, I realize once again that she’s not some statistic in a medical textbook. She’s my baby, our Johanna.

The story is accompanied by galleries of photos of babies with Down syndrome, submitted by readers in honor of National Down Syndrome Awareness Month.

See:

• Photo Gallery – A Special Joy: Beautiful Babies with Down Syndrome
• Photo Gallery — A Special Joy 2: More Beautiful Babies with Down Syndrome
• POLL: If Sarah Palin were a father to special-needs infant son Trig and pregnant teenage daughter Bristol, what would you think about the VP nomination?