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Video:

Noah Homes dance party

Residents of Noah Homes get their groove on.

Residents of Noah Homes get their groove on.

In the center of a room decorated with red tinsel hearts, Patrick Glancey dances body-to-body with his girlfriend of six years. While Frank Sinatra croons “The Way You Look Tonight” through large stand-up speakers, the couple kisses and sways in a circle. Most of the other 60 or so people in the large room sit or stand around the ten tables, draped with red and white cloths and sprinkled with silk flower petals, set up around the dance floor. Although four other couples dance, none appear quite so comfortable and affectionate with each other as Patrick and his lady. At age 48, both of their lives have far exceeded the 1983 life expectancy rate of 25 years for people with Down syndrome. According to the National Down Syndrome Society, today that rate is up to 60, leaving Patrick with plenty more time for loving.

At the same time, the increased life expectancy rates for people with developmental and intellectual disabilities stands at the center of a funding struggle between the State of California and nonprofit organizations such as Noah Homes, the residential campus in Spring Valley where Patrick has lived for 27 years.

Noah Homes

12526 Campo Road, Spring Valley

In 1983, Noah Homes opened as a faith-based group home for adults with developmental disabilities. It began with eight acres, one house (Casa de Felicidad), and six grown children of Catholic families. Today, the 70 residents fill eight houses, six on campus and two in the surrounding neighborhood. Four of the original six residents still reside here, and the waiting list holds 200 names. The average age of current residents is 43, but eligibility begins at 18.

Molly Nocon at entrance to Noah Homes

Molly Nocon at entrance to Noah Homes

“The youngest on our waiting list is ten,” Molly Nocon, the organization’s CEO tells me. “We thought that was a little much, but that’s okay. The mom’s really proactive.”

The glass doors in the activity-room-turned-ballroom look out over the beautifully manicured landscape of the 11-acre campus, which includes a fountain, a small rock pond, Canary Island Date Palms, and expanses of lawn kept bright green with well water. The grounds bring a resort to mind.

“One of our board members created a license plate frame that reads, ‘Noah Homes: We should all live so well,’” Nocon tells me.

She’s quick to add that it’s meant to suggest their residents deserve to live as well as anyone else, not better. The Fall 2011 Noah Navigator newsletter makes a similar point by juxtaposing a photo of rundown apartment buildings with a photo of the idyllic front porch of a Noah Homes house. The text reads, “Without you, our residents could be here...instead of here.”

Nocon became involved with Noah Homes in 1996, when her brother, Herbie, moved out of their family home and into Casa de Flores.

“Herbie had always planned on living with my sister or me [after our parents passed away],” she says. “Neither one of us lived by a bus line or by a workshop or by something to help him. Herbie said, ‘Heck no. I want to be independent. I want my own thing going on.’”

Their parents knew of (and had donated to) Noah Homes through the Catholic community. When Nocon and her sister called to inquire about the home, they learned there was a waiting list of about 100 people. They put Herbie’s name on the list but didn’t expect anything to come of it. Three months later, when the organization purchased a home in the neighborhood nearby, Nocon and her family received word of an opening.

“Herbie fit the profile of the family unit they wanted to create in that home,” Nocon says. “Higher functioning, all guys, mobile (because it was kind of on a hill), active, and able to communicate.”

Herbie lived at Noah Homes for 14 years, and was known as the Sheriff of Noah.

“My brother was obsessed with the FBI, with the police, with firemen,” Nocon says. “So he made sure that everything was safe. He used to walk the property and make sure the doors were locked. If you left your car door unlocked, you got a little ticket that had a bunch of gibberish on it, but said that you were not safe and didn’t take care of things. It was the way he always was. [As kids] we used to fight on Sunday nights about whether we would watch The FBI or The Wonderful World of Disney. He usually won.”

Nocon joined the board in 2002, became chairman in 2005, and then acted as interim chief executive for 2007. Although she had a “nice cushy job” that allowed her to raise her children and work from home, before taking over full-time as executive in 2008, it’s a decision she’s glad she made because it allowed her daily contact with Herbie, who was diagnosed with Alzheimer’s in 2009.

“He would come in here every day and say ‘Hey, Molly. How are things going?’” she says. “I never had to go through what my sister did, whom he didn’t recognize anymore. Every day for the last two years of his life, he knew who I was.”

Herbie died two years ago, a few days shy of age 60, although his doctors said he wouldn’t live past 40.

The Three D’s

In 1969, the State of California passed the Lanterman Developmental Disabilities Services Act, known as the Lanterman Act, which says that people with intellectual disabilities have a right to services and supports that allow them to live the most independent and productive life possible, as well as to be involved in the planning of how those services are delivered. The legislation later expanded to include people with epilepsy, cerebral palsy, autism, and other disabling conditions similar to intellectual disabilities. The San Diego Regional Center is one of 21 nonprofit regional centers, all of which are run by boards of directors and funded by the state. The regional centers use case managers to help develop individualized program plans, locate and coordinate services, and administer funds to service providers.

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Comments

Susan Luzzaro April 2, 2014 @ 3:49 p.m.

Great job Elizabeth--very readable but you still pack a lot of information into the story. In the prolonged recession we are living in, people with disabilities have experienced so many cutbacks.

1

Elizabeth Salaam April 2, 2014 @ 9:05 p.m.

Thank you so much, Susan. Writing this one opened my eyes to so much.

0

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