Dana Goldstein, an associate editor at the Daily Beast, says improved prenatal testing could well reduce the number of secular, educated families who have children with Down syndrome.

She interviews parents of kids with DS, who say they hope that doesn’t happen. An excerpt:

Rachel Adams [a professor of English and American studies at Columbia University whose son has Down syndrome] describes herself as a pro-choice feminist, a woman who wouldn’t want to deny any other woman the choice of whether to carry a pregnancy to term. But she’s also committed to giving expectant parents a more hopeful view of what it’s like to be a mother of a child with Down syndrome. This spring, she and a friend will be giving talks to genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

Adams sees a contradiction in our society’s increasingly friendly bearing toward disabled people and its obsession with developing ever more revealing genetic tests. “Now that I have Henry, I go from such optimism to such extreme worry,” she says. “There are ethicists who ask, ‘At what cost to humanity is the elimination of whole categories of people?’ You’re living with these contradictions-wanting women to have complete reproductive freedom but wishing the choices they had were conveyed to them in a different way.”

From the Pittsburgh Post-Gazette:

Giving gifts to a people with developmental disabilities, like Sarah Michael (left, with her family), during the holiday season can put their government benefits in jeopardy if not done properly.

If the gifts or benefits exceed $2,000 in total assets, the government can freeze critical benefits such as Medicaid, Medicare, Supplemental Security income or Social Security income.

“We see a lot of holiday celebrations, birthdays, communions and bar mitzvahs where people make several small monetary donations to special needs children, and if those compile over $2,000, their benefits are in jeopardy,” said Helen Sims, a special care planner with the Downtown financial planning group Guyaux Mandler Mah, which is affiliated with MassMutual Group.

… Families with disabled children can provide more security for them without disqualifying the child from government benefits by creating a special needs trust.

(Post-Gazette photo)

Journalist Judy Woodruff jumps into the new PBS NewsHour blog, “The Rundown,” listing some topics she’s eager to talk about. Among her top five: Disability. An excerpt:

Our older son has serious physical disabilities that have opened our entire family’s eyes to the plight of those who wake up each day with the equivalent of a mountain to climb, simply to get ready for the day. As advanced as our nation is, we have a very long way to go to even the playing field, much less give them the opportunities they deserve, to be the contributing members of society they want to be. I am always on the lookout for stories and developments that relate to their lives.

Earlier posts here.

See also this 2004 Wall Street Journal op-ed by Woodruff’s husband, Al Hunt: More attention for disabilities.

(PBS NewsHour photo)

By Joseph Shapiro on National Public Radio’s health blog:

A new study finds that nearly one in three American adults serves as a caregiver for an elderly or disabled loved one, performing what amounts to an unpaid half-time job. On average, those caregivers spend about 19 hours a week providing care.

The survey, sponsored by the AARP and the National Alliance for Caregiving,  found that family caregiving exacted a toll in the workplace. The vast majority of caregivers cut their work hours in order to care for a loved one, while others took a less demanding job or leave of absence, turned down a promotion, or quit working altogether.

Most respondents said they did not consider caregiving a hardship and largely reported excellent or very good health. Yet more than half said their responsibilities took time away from family and friends, leaving them feeling isolated.

Pamela Wilson, who writes for the “Special Needs Children” site at Bellaonline.com, sends in this reaction to the recent report that 27 percent of parents of children with Down syndrome surveyed would not seek to “cure” their children. She is the mother of a young adult with Down syndrome.

—

First of all, we don’t really know what choices we would make if a safe, effective “cure” for the range of intellectual disability found in most individuals with Down syndrome was developed.

The thought of giving pharmaceuticals of any kind to newborns or young babies is distressing to most parents, especially since so many are known to have serious side effects in teens and adults.

I don’t think we can compare the rejection of cochlear implants by some in the Deaf community to experimental pharmaceutical treatments to reverse or avoid learning challenges in babies and children with Down syndrome. One is a cultural issue over a “condition” shared by a parent and their son or daughter.

Most parents of individuals with Down syndrome do not share a culture of disability with their sons and daughters.

That being said, we do want the best opportunities and support for them as they are growing up and throughout their life spans. So far, the “side effects” of educational opportunity, inclusive education and supported living, being welcome and accepted in the mainstream of our communities, are all positives for everyone involved.

People with Down syndrome have the right to express their diversity just like everyone else. Who’s to say what will happen if research does develop a medication or treatment that “cures” the learning challenges of Down syndrome? (more…)

Rosa Monckton, whose 14-year-old daughter has Down syndrome, writes in the [UK] Daily Mail that the parents of children with disabilities face a shameful lack of support that is “driving some to breaking point – and even murder.”

Monckton’s new documentary, “When Mother’s Love Is Not Enough,” documents the pressures faced by parents who have children with disabilities, and examines the maze of bureaucracy often prevents families getting the help they need. It will be aired tonight on BBC1

An excerpt:

Our standards of care are dismal, our understanding of what these families need is non-existent and the endless bureaucratic process required to access vital services is mind-boggling.

… That’s got to stop. There has to be less money spent on administration and more on delivery; there needs to be less assessing and more providing.

… Faced with the exhausting round-the-clock care that the parents of disabled children have to provide, I find it all too easy to sympathize with those parents who do reach breaking point, and even with the tiny number who end up taking their child’s life. They are not evil; they just didn’t get the help they needed.

But what both heartens and astonishes me is the ability of the vast majority of parents of disabled children to soldier on, to keep on battling the bureaucracy and fighting for a better future  –  almost any future  –  for their disabled child. And they do so because they love them as only a parent can.

(Rosa Monckton and daughter Domenica, BBC photo)

From the Grand Rapids [MI] Press:

The Perinatal Care Program provided by Hospice of Michigan offers comfort and guidance to families coping with a prenatal diagnosis of a life-limiting condition. (At left, Jody Kyser and her daughter Chloe, who had Trisomy 18).

The program is one of only four in the state that offers support to such parents and helps them deal with the uncertainty of the diagnosis – answering questions like how to give the news to the other children, how to deal with questions about the pregnancy, how much medical intervention to seek, and how to plan a funeral.

“It’s really nice to be able to offer families something more,” said Trudy McKanna, a genetics counselor. “You feel like you give them perhaps the worst news of their life, and you want to be able to help them. If there’s nothing you can do to help the baby medically, you at least want to be able to take care of their emotional needs and their family needs.”

(Photo from Grand Rapids Press)