On National Public Radio, a feature about a Vancouver nonprofit organization that is reimagining traditional ways of providing support to adults with disabilities.

The group, called Planned Lifetime Advocacy Network (PLAN), helps to set up and nurture long-term support networks for individuals. It also spearheaded a successful nationwide effort to set up tax-deferred savings plans for people with disabilities in Canada. Family members say the savings plans offer their loved ones real financial security.

As a result, banks and other businesses are “beginning to see individuals with disabilities not as charity cases, but as consumers with buying power.”

A for-profit spinoff of the group, Tyze.com, provides online software that helps people use the Internet to build support networks for their loved ones.

Related story in the Toronto Star: The Tyze that bind

For couple with Down syndrome, does love conquer all?

Newsweek calls this Tribeca-award-winning documentary “a triumph” and “a refreshing and rare story for television.” It’s a chronicle of the courtship, marriage, and happily-ever-after of Monica and David, two young people who have Down syndrome.

The Washington Post calls it “a moving affair, a film that can inspire tears of joy within the first five minutes.”

At a time when characters with disabilities are almost unseen on TV, filmmaker Ali Codina provides an intimate portrait of these two as they struggle to balance their desires for independence with their need to rely on others for assistance. The pair live with family, and have not been able to find work.

Codina tells the Miami Herald that she hopes the film will help build public awareness and acceptance of people with disabilities .

“That was always my goal throughout the making of the film: To get it to the largest audience possible who may know very little about disabilities,” Codina says. “Once the viewer connects with the love story, you can start dealing with broader issues, such as addressing the fact that we don’t often acknowledge adults with disabilities as adults. We treat them as children. I also hope people who see Monica & David start to think differently about employment for the disabled. It’s a pretty tough reality in terms of what’s available for them.”

… “Monica & David is one of the greatest love stories of all time,” says Anthony K. Shriver, founder and chairman of Best Buddies. “I am also hopeful that it will be a wake-up call for all of us about the endless love, passion and ability that all individuals with intellectual disabilities possess.”

More coverage in the Denver Post. The movie’s home page is here.

Earlier post here.

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 National Public Radio/Kaiser Health News:

In 2005, when Congress funded a $1.3 billion initiative to move people out of nursing homes and long-term-care facilities, it was anticipated that more than 37,000 moves would be completed by the year 2013. But state data collected by Kaiser Health News shows that only 5,774 people have been moved to date.

Among the difficulties that states are reporting: problems finding affordable housing, resistance from nursing homes, and stringent federal rules that govern who qualifies and what types of community settings are permitted.

Georgia had hoped to move 1,312 people by 2011, but had completed moves for only 221 people through the end of last year. The state has since cut its 2011 target by more than half.

The new health care law adds $900 million in new funding for the program, called Money Follows the Person, extends it until 2016, and loosens eligibility rules.

A plea for civility

Liane Kupferberg Carter, a writer who has a child with autism, writes in the Huffington Post that she’d like to see an end to the “war raging within the autism community.”

Angry arguments over such topics as vaccines, purported autism cures and neurodiversity are preventing the community from finding common ground, she says. An excerpt:

…whether you are trying to heal autism through genetic research, environmental studies, or are urging acceptance of neurodiversity, there is one thing on which everyone can surely agree: we love our children. They deserve greater awareness, acceptance and opportunity. We desperately need more research on promising treatments, and programs to meet the housing and employment needs of a population that is rapidly aging up.

On the eve of World Autism Awareness Day, I’m pleading for more civility in our community. Open debate that is not personal, petty or mean. There’s just too much at stake. How can we expect Congress to listen to us, when we are so divided among ourselves?

Our children deserve our respect. Our commitment. Our hope.

We aren’t the enemies.

Autism is.

Related post here.

Neil Greenspan, writing in the Huffington Post, says the fundamental problems facing adults with autism-related disabilities are rarely addressed by the media. Reasonably typical, he says, is a young adult of his acquaintance who lives alone and is unemployed and socially isolated.

Among the problems Greenspan sees for adults with autism:

• A lack of organized support for socialization or recreation;
• A lack of job prospects, coupled with a lack of effective help in finding and maintaining work;
• A lack of housing options for adults who need some supervision or support;
• A shortage of trained medical professionals and coordinated care.

An excerpt:

Current policies and practices usually condemn adults with autism to constricted lives of mostly sub-optimal choices. Progress on the core deficiencies identified above will have to be achieved if the majority of adults with autism are to have even a modest chance for reasonably fulfilling and productive lives. Continuation of the status quo will represent a moral as well as a policy failure, as warehousing should be for consumer goods, not people.

Greenspan is an immunologist in the Department of Pathology at the Case Western Reserve University School of Medicine.

From the Los Angeles Times, Pasadena Star News, KABC:

California Gov. Arnold Schwarzenegger announced today that a group of disabled renters who had received eviction notices would not be losing their homes. “Your eviction notice is being terminated,” he said.

Residents of the Regency Court Apartments in Monrovia had been told that everyone under age 62 should not have been allowed to move in and would have to leave.

Schwarzenegger said he was inspired to act after reading about the dispute in the Los Angeles Times, remembering the activism of his mother-in-law, the late Eunice Kennedy Shriver.

Some disability activists complained that Schwarzenegger’s announcement didn’t change the state’s plan to dramatically cut services for 140,000 senior citizens and people with disabilities.

“If the Governor is truly listening to the voice of Eunice Kennedy Shriver, he’ll stop attacking seniors and people with disabilities and do whatever is necessary to reverse the drastic and dangerous cuts he’s made to the State’s home care program,” said Hugh Hallenberg, long time disability advocate. “If he doesn’t, it’s obvious that this was nothing more than a press stunt.”

(Photo of Lily Hixon with Arnold Schwarzenegger by Ken Hixon, from the Pasadena Star-News)