From the BBC, Washington Post, Miami Herald:

Monica & David, a documentary about the romance and marriage of two young adults with Down syndrome, has won the top documentary prize at the prestigious Tribeca Film Festival.

The film was directed by the female subject’s cousin, Miami’s Alexandra Codina, and was chosen from among 30 documentaries to receive a $25,000 prize.  It is scheduled to premiere on HBO in October.

From the jury’s statement:

“Monica & David takes an incredibly intimate situation and beautifully translates it in a way that makes you think about your own life. It’s a clear and observant look at a family and the purity of love, fueled by an organic sense of the sadness, joy and everyday humor that fill this epic journey that is life.”

An excerpt from the festival’s program notes:

… an intimate, year-in-the-life portrait of two childlike spirits with adult desires as they prepare for their fairy tale wedding and face the realities of married life afterward. Taking immense pride in their new roles as husband and wife, David wants to bring home the bacon, and Monica wants to fry it in the pan. They want babies of their own. But their unique circumstances still have them living with Monica’s mother and husband. How will this unique family face its challenges and move forward?

… along with their story is one of two different mothers who sacrificed and struggled against an intolerant world to provide for their children.

The official trailer is here.

From U.S. News & World Report:

As children with autism are growing up and looking to the future, innovative programs are popping up around the country to help them move from high school to adult life.

The aim: give them the chance to go to work, go to college, or even start a business rather than collecting disability benefits and being limited to a sheltered workshop.

Some options include:

• “Supportive and Customized Employment,” in which school systems and state vocational rehabilitation programs work together to help teenagers move into the workforce while still in high school.
• “Employment First” programs which help shift the priorities of social service agencies so that the first step is placing people in a paid job in a regular workplace rather than collecting disability benefits.
• Resource ownership, in which job-training funds and Social Security work incentives are used to buy tools or equipment that a person with a disability will then use on the job.
• Small business ownership.

See also:

How 1 Autistic Young Man Runs a Business — U.S. News and World Report. A young man with autism and Down syndrome runs Poppin’ Joe’s Kettle Korn in Louisburg, Kan., with the help of his parents and five part-time employees.

(U.S. News & World Report photo)

From the Knoxville [TN] News Sentinel:

Because of advances in medical care, many people with Down syndrome are now expected to outlive their parents.

Parents like Scott and Teresa Boyer  of Knoxville, TN, would like their 29-year-old son Matt to live with them as long as possible, but worry about what the future may hold. Another son says he wants to assume the role of caregiver as his parents age.

Family care is the primary source of support for most people with disabilities, and it’s estimated that 700,000 people with developmental disabilities around the country are living with one or more parents over the age of 65.

The unfortunate fact is the shortage of independent living arrangements for those with mental disabilities.

“We’re only taking emergencies at this point,” says John Craven, director of the Knox County Division of the Tennessee Division of Mental Retardation Services. He says the waiting list for supported apartments for the mentally disabled is “thousands” long, and state funding is in short supply, with more budget cuts expected this year.

(Knoxville News Sentinel photo)

From the Washington Post:

As people with Down syndrome live longer, healthier lives, their parents are working with greater urgency to try to help them achieve independence. Adult services, like supervisory programs and group homes, are scarce. An excerpt:

“It’s a huge problem, and it’s not just a problem involving Down syndrome but for all people who have an intellectual disability,” said Peter V. Berns, executive director of the Arc of the United States, whose headquarters is in Silver Spring. “There’s a serious crisis brewing. There are actually huge waiting lists for services across the United States.”

In 2006, 61 percent of people with an intellectual disability were living with their families, and more than 700,000 of them were living with parents or family members who were older than 60, Berns said.

“The reality is that the services are not available to take care of these people in the event that their family member either becomes sick or passes away,” Berns said. “In a sense, their very freedom is at stake.”

(Washington Post photo. Jennifer Holden, 20, who has Down syndrome and is a sophomore in George Mason University’s LIFE Program, takes a field trip with her class.)

Parents defend his decision

From the [UK] Times, [UK] Guardian and BBC News:

Police are investigating the death last month of a promising young rugby player who had been injured earlier in a training accident. Dan James died after traveling to a Swiss euthanasia clinic.

His parents, Mark and Julie James, defended his his decision to take his own life, saying that their son was “an intelligent young man of sound mind” who was “not prepared to live what he felt was a second-class existence.”

James was said to have been destined for a professional playing career when he was left paralyzed from the chest down after his spine was dislocated in a training session in 2007.

James is believed to be one of the youngest Britons to have traveled to Switzerland for an assisted suicide, a practice that is outlawed in the UK.

See earlier post here.

See also: Why my son had the right to die, by the mother of Dan James — [UK] Times

(Times photo)

Advocacy groups stress joys and potential, but some doctors caution that the prospect can be daunting

From the Chicago Tribune:

Down syndrome advocacy groups have embarked upon “one of the most aggressive campaigns in decades to change the public perception” around the condition.

The effort has been given a boost by the candidacy of Sarah Palin, whose son Trig has Down syndrome, and is particularly timely now that Congress has approved the Prenatally and Postnally Diagnosed Conditions Awareness Act. The bill, passed last week, would provide up-to-date information for parents who receive a diagnosis of Down syndrome or other conditions.

Some doctors, including Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, caution against providing a picture of the disorder that is “too rosy.”

“Whenever something like this is in the media, there is the tendency to make it appear much more beautiful than it is in reality,” Abramowicz said.

Angie Picchi, 28, (above, with her mother Linda) is nicknamed the “Myth Buster” for her work meeting with groups of doctors and refuting stereotypes and low expectations.

See also: Parents of children with special needs see hope in Palin’s advocacy — Shreveport Times

NPR features a series on students with disabilities preparing and transitioning to college with the following segments:

Q&A: Prepping Kids With Disabilities For College-NPR

Roger Diehl (photo left), a freshman at the University of Wisconsin-Madison who has Asperger’s, attention deficit hyperactivity disorder (ADHD), and depression, and his mother Sita Diehl, who runs Tennessee’s National Alliance On Mental Illness (NAMI), answer questions about getting ready for college.

Roger emphasizes the importance of focusing on the individual strengths and interests of students while learning social rules. Sita says social support is essential, particularly family and good friends, when considering placement.

See earlier post on Roger Diehl here.

10 Tips For College Students With Disabilities-NPR

Clinical psychologist and author Kathleen G. Nadeau shares strategies from her book, “Survival Guide for College Students with ADHD or LD” for developing learning and organization strategies to cope with learning disabilities at college.

Learning To Thrive With Attention Deficit Disorder-NPR

Emily Algire shares her story of transitioning to college as a student with attention deficit disorder (ADD).

“I think she’s got very good self-awareness” says [Emily's mother Betty] Overby. And all the tools she’s been taught for coping with her ADD are helping her feel strong.”

Editor’s note: Are Emily and Betty any relation to NPR correspondent Peter Overby?

(NPR photo)