Boston Herald columnist Lauren Beckham Falcone on HBO’s documentary about a young married couple with Down syndrome:

“Monica & David” is more than a love story; it is a reverential, nuanced movie that shows that people with developmental disabilities want the same things everyone wants out of life: Love. Work. Companionship. Independence. These things aren’t the exception. They’re the expectation.

“Monica & David” airs today on HBO.

Other coverage of the movie’s HBO premiere:

Matthew Gilbert in the Boston Globe:

Reader, I cried … Monica & David” gracefully presents the world of people with Down syndrome at a crossroads, as embodied by these two individuals and their sweet, life-affirming love.

Ellen Gray in the Philadelphia Inquirer:

If you make it through the first 10 minutes dry-eyed, you’ll want to see an ophthalmologist.

ABC News: HBO film asks provocative questions about sex, children

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

Kevin Minnick, writing for the Cherry Hill [NJ] Courier-Post, profiles Brad Hennefer, the 21-year-old athlete who is the heart of the Brad Hennefer Golf for Life Foundation.

The foundation. which introduces the game of golf to people with Down syndrome, was created in 2006 by Brad and his brother Bobby, mother Nancy and father Bob (above). An excerpt:

… Never in their wildest dreams could they have imagined how far the foundation would come in such a short period of time.

What began as clinics has transcended into public speaking around the country, participation in national events, hob-nobbing with celebrities.

… “We never dreamed he would be doing what he’s doing,” Nancy said. “Families see hope when they see him.”

… In life, people come and go. Then there are those you never forget because they’ve made a difference. That’s Brad Hennefer.

Oh yeah.

Earlier posts here.

As Massachusetts approaches a June 30 target for closing the Fernald Developmental Center in Waltham, families of its 89 residents are fighting to keep the 200-acre institution open.

Here’s a sampling of some recent coverage:

They fight for Fernald — Waltham, MA, Daily News Tribune. Nearly 50 people gathered to picket at the Fernald Developmental Center in a protest organized by the American Federation of State, County and Municipal Employees Local 402. As union members, guardians and family members of residents carried signs, a large balloon overhead bore a sign that read: “Save Fernald, stop evicting the disabled.”

“What they have done is intimidate old men and women, in the twilight of their life, into moving their very vulnerable loved ones. It’s so disgusting and reprehensible. The governor is sitting aside while his administration is evicting mentally retarded people from their homes. He should be ashamed of himself,” said a spokesman for the group.

Fernald closure saves money — Waltham, MA, Daily News Tribune. Guest columnist Gary Blumenthal writes that the state cannot afford to maintain a six-campus institutional system that was built to house over 10,000 people and now serves only 798.

States have worked hard to close these institutions in favor of community- based programs that offer equal or better care at substantially less cost. States have moved in this direction based on over 30 years of best practice recommendations from disabilities professionals; and non-partisan groups such as the National Conference of State Legislatures. NCSL advises its members that the cost of state institutions is often up to six times higher serving essentially the same people as those in community programs. Decades of research conducted by the American Association on Intellectual and Developmental Disabilities confirms that community-based care is of higher quality and satisfaction to families whose loved ones have made a transfer from institutional to community services.

Closure of state institutions is a sound programmatic and fiscal policy and is inevitable.

In the swim of things — Boston Globe. Columnist Yvonne Abraham says the swimming pool at the Fernald Center is a welcome spot for hundreds of area people with various disabilities because it allows them the respite of a place where “everybody is different, so nobody is.”

Those who favor the Fernald closing believe the time for separating those with profound disabilities from the rest of society passed long ago. It’s a noble view. But as [family members of people with disabilities] see it, the rest of society isn’t always quite ready for them. Now there will be one less place where they can forget that.

Time to listen to the voice of despair — Boston Herald. Columnist Joe Fitzgerald interviews Mary Galvin, the sister of a Fernald resident. She says she fears her brother Eddie will be sent to an institution “comparable to what you saw in One Flew Over the Cuckoo’s Nest” unless some politician steps in to halt the planned Fernald closure.

“I’m still looking for someone with a conscience,” she said. “But I also know that time’s running out.”

UPDATE: ‘Disabled can find opportunities in the community’ — letter from Gary Blumenthal in the Boston Globe. Blumenthal, a recent appointee to the National Council on Disability, refutes Yvonne Abraham’s column (above). An excerpt:

When Abraham writes about the pool at the Fernald Developmental Center – the state’s largest institution, which is slated for closure this year – she is writing about a segregated facility. Our society proved generations ago that separate but equal is a bad idea that does not work.

My brother has autism and swims three times a week at the pool at his local Jewish community center. The others who go to that pool have accepted him and welcome him warmly every time. He is a part of that community.

Massachusetts and all of its residents deserve no less.

Claim they weren’t adequately informed by adoption agency

From the New York Times:

A couple from Virginia Beach is suing Bethany Christian Services, an adoption agency, seeking compensation for the care of their Russian adoptive son, Roman. Chip and Julie Harshaw claim the agency misled them about Roman’s condition, describing him as “a beautiful, healthy, on-target, blond-haired boy.”

After repeated bouts of hyperactivity and aggression, the boy was diagnosed with fetal alcohol spectrum disorder, brain damage and neuropsychiatric problems, with an IQ of 53. He was placed in an institution, and one of his doctors said he is not expected to ever live independently.

The Harshaws are among a growing number of parents who have made complaints against adoption agencies in recent years, claiming that they were not adequately informed about their children before adopting them. The Harshaws say they told the agency they could care only for a child with minimal health problems and a “good prognosis for normal development,” and would not have adopted their son if they had known the extent of his impairments. Bethany disputes most of their claims.

See also:

Fetal alcohol syndrome suspected in ‘returned’ adoption– Boston Herald

Fetal alcohol disorders common in Eastern European adoptees — Reuters

Adopted boy’s return highlights problems in Russian orphanages — Washington Post

Adoptive parents take on more than a child — National Public Radio

Russian adoptees get a respite on the range — New York Times

From GreenwichTime.com:

The Greenwich, Connecticut, school district has asked a group of graduate students to help it work better with parents to avoid costly litigation over special education services for children with disabilities.

The students, who are training at SUNY Oswego College to be school superintendents, will conduct case studies of 20 Greenwich families who pursued legal cases against the district last school year. The research will come at no cost to the district.

“We want to know what led parents to get to that point,” said Superintendent of Schools Sidney Freund. “What led them to go outside the district to get a resolution to a conflict?”

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?