From the New York Times:

School districts across the country are struggling to meet the needs of students who were once predominately isolated in institutions. Among the hard questions districts face:

• How can schools balance instruction in functional skills and academics for students with severe disabilities, even as they are providing custodial care?
• Is inclusion really helping these students?
• How can schools measure progress reliably for these students?

The Times highlights the story of Donovan Forde, 20, who has cognitive disabilities brought on by a traumatic brain injury that occurred when he was hit by a car as an infant. After 15 years in the New York City school system, his mother says, Forde is more social but has made almost no other progress. He is not able to walk, speak or feed himself, and has not achieved most of the goals set out in his education plan. When not in school, Forde lives in a nursing facility on Roosevelt Island and receives services that are paid by Medicaid.

An excerpt:

Because they need intensive interventions, students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classrooms, addressing a core concern in the field – that too many children are not getting access to the regular curriculum.

But whether Donovan is best served in an academic-focused classroom is an uncomfortable question for many educators, because few better options are available, and inclusion “indicates a level of hope for parents, and the absence of hope is deadly,” said David Rose, the founder of CAST, a national organization that works to expand learning opportunities for students with disabilities.

“It’s an awkward period,” Mr. Rose said, in talking about the education of children with the most severe cognitive disabilities. “Because we know what we are doing is not right, and we often don’t talk about things when we don’t know what we are doing about them yet.”

Legal battle looms over parental rights of woman injured in childbirth

By Maria L. La Ganga in the Los Angeles Times:

Abbie Dorn, who conceived triplets following fertility treatments, was injured in childbirth four years ago and now is no longer able to move or speak. Her husband, Dan Dorn, has since divorced Abbie and has refused all requests to let her see her children. He argues that visitation would be too traumatic for them.

Following a multi-million-dollar malpractice settlement, Dan is asking that Abbie pay child support. Abbie’s parents are fighting a legal battle to force Dan to let her see her children. An excerpt:

The bitter dispute raises questions both legal and profoundly human. What is a parent? What constitutes a parent-child relationship? How do you show children that they are loved? And can Abbie Dorn ever be a mother to her children?

From Tom Brokaw, NBC News, a feature about American athlete Kevin Pearce, who was considered one of the best snowboarders bound for the Olympics until he was gravely injured in a training run. He sustained a traumatic brain injury, and is now working to regain his speech, vision and physical coordination.

Brokaw says Pearce has a “special relationship” with his brother, David, who has Down syndrome, a “kindness and patience” that the family has drawn upon during its recent crisis. Pearce’s mother says the wisdom she gained from David helped prepare her to cope with Kevin’s accident and recovery.

” I had never realized before this happened that the great gift of David in our life has been to prepare me for this experience,” she said. “And I feel way better equipped to deal with this thanks to having had David in our life for 24 years.”

UPDATE: A Facebook page honoring Kevin Pearce has garnered almost 44,000 fans as of Wednesday morning. Notes Sports Illustrated:

The site has received notes of support from fans and fellow snowboarders, but also from many survivors of traumatic brain injuries who have described the productive lives they now lead.

There’s also a Facebook page created by fans of David Pearce.

(Photo from NBC News)

From the San Jose Mercury News:

The owner of a controversial California doughnut shop, “Psycho Donuts,” will square off against the head of a leading state mental health organization in a half hour televised debate to be aired on KTVU -TV later this month.

The shop in Campbell, CA, features doughnuts dubbed “Bipolar” and “Massive Head Trauma,” and offers a straitjacket and padded cell for camera-wielding customers. Oscar Wright, CEO of United Advocates for Children and Families, says the shop’s theme stigmatizes families of people with mental disorders, but shop owner Kipp Berdiansky says it’s all in fun.

Earlier post here.

Funding shortfall, lack of coordination blamed

From the [Toronto] Star:

The government ombudsman in Ontario, Canada, has found that some two dozen families are living in fear that they will be forced to surrender custody of their children in order to obtain care for them.

The parents say they have been told that there is no money left in the government fund designed to support home care for the children, who have severe disabilities, but they can get services if they surrender their parental rights to the Children’s Aid Society.

“No one should be forced to give up their child,” said one parent. “This is horrible.”

The report by ombudsman André Marin calls for reform to protect parental custody rights and secure funding to care for the children at home.

UPDATE: Where’s Ontario’s humanity, mom asks — [Toronto] Star

From the Washington Times:

An informal support network is organizing to assist prospective parents who have received prenatal diagnoses of disabilities. The dilemma of these parents was not widely discussed until last fall, when GOP vice presidential hopeful Sarah Palin talked about refusing to abort her son Trig, who has Down syndrome.

Parents now say they feel pressure from doctors and others to terminate their pregnancies. The Prenatally and Postnatally Diagnosed Conditions Awareness Act, signed last year by President Bush, was designed to provide women with accurate information about their child’s condition. But doctors are dubious about whether the measure has had much of an impact on the way medicine is practiced.

“The medical community has not been aware of alternatives,” says Dr. Byron Calhoun, vice president of the obstetrics and gynecology department at West Virginia University in Charleston. “The only alternative parents are given is termination of pregnancy or they’re told they are on their own.”

… “People think your life is over when you have a handicapped child,” [said Dan] LaHood. “It’s a cultural view to eliminate them as undesirable. They don’t know what the demands are and what the rewards are.”

See also:

• Strength for the journey; A family’s experience with the birth of a daughter with Trisomy 18 — Macon Telegraph
• Isabella will always be treasured little sister; Girl with Trisomy 18 lives for eight days — Fredericksburg [VA] Free Lance-Star

Rushing to judge others — the Toronto Star. An excerpt:

[Jason] Wallace’s daughter, two-month-old Kaylee, has a rare medical condition and doctors had said she was unlikely to live long. Wallace and his wife Crystal Vitelli hoped their daughter’s heart could be donated to save the life of another desperately ill infant, one-month-old Lillian.

But when Kaylee was removed from a respirator she didn’t immediately die, so that transplant didn’t take place. Then the public recriminations began.

Public comments posted on one newspaper’s website included accusations that Wallace would rather have his daughter die than live with the inconvenience of a severely disabled child.

… We should not rush to judge, especially when we don’t know all the circumstances or possess all the facts. From a distance, it is difficult to appreciate the personal anguish someone else is going through.

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