Photo by Howie Rosen

Photo by Howie Rosen

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.

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

“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.

The San Diego Regional Center funds Noah Homes based on a flat rate (per client), negotiated based on a level-two or level-three classification of the client. The former requires one staff member per six residents to assist with daily living, and the latter requires one staff to every four residents. According to Nocon, the current rate for a level-three works out to approximately $3 an hour for round-the-clock-care.

“We have had a rate freeze since 2003,” she says. “The other thing Sacramento’s done to try to cut costs is put a freeze across the board for any increases in cost care, such as being able to move a level-two house to a level-three. So if someone has lived in that house for 15 years, and there are six of them, and they’ve all aged 15 years, then now their needs are probably level-three.”

In that case, Nocon’s options for the care of these six hypothetical residents would be to send them to a level-three facility with a vacancy elsewhere, and the state would pay for their care in the new facility; or she could build a brand new level-three facility, and the state would fund the care of the residents there.

“But they won’t raise the level of existing care because they’re, I quote, ‘saving money,’” she says. “So I have to take them out of their house, take them out of where they’ve known as home for 15 years, and send them someplace else to get more care.”

Besides the logistics and the stress of moving, the getting-to-know-you process with a brand new group of caregivers has the potential to diminish the residents’ quality of life. Nocon gives the example of one of her residents, a woman named Liz who has cerebral palsy. Nocon shapes her hands into the symbol that Liz uses to let staff know that she needs to use the bathroom. It’s an obscure symbol, one particular to Liz.

“They’re not going to know that because they haven’t had her for 20 years like we have,” Nocon says. “If you don’t know this [symbol], then she pees, and you put her in a diaper.”

Diapering, Nocon says, is one of the three D’s that happen when her residents end up in nursing homes.

“They don’t know our population, so they diaper them, they drug them, and they die. Statistics show that anybody in our population that goes to a nursing home dies within six months in most cases.”

Lick It Up

Rewind to the day before the dance during my tour of the campus with Nocon. Somehow, I misinterpreted the two glass cabinets in the lobby (stuffed with Noah’s Ark figurines in ceramic, glass, wood, and more) as kitschy, merely a play on the name Noah. And at this point, I have not yet looked through the copies of Noah Navigator (each of which is full of biblical references) that Nocon handed me on entering her office. So when I strategically (and mistakenly) dispense with formality and ask if, given that the houses are co-ed, any of the residents “hook up,” Nocon stiffens and informs me that Noah Homes is a faith-based organization. Although this doesn’t answer my question, I’m sufficiently embarrassed and do not probe into either her statement that, yes, platonic relationships develop but are nothing to worry about (not usually anyway), or her explanation that by faith-based, she means all faiths are welcome, but nothing is forced.

Five minutes later, when I meet Patrick for the first time, both my embarrassment and my need to probe diminish significantly. I figure that if no one has forced Patrick to remove all the Kiss memorabilia from his room, then it can’t be all that restrictive. If it is, then Patrick is bucking the system far worse than I did with my ridiculous use of the term “hook up.”

Patrick’s single room in Casa de Caridad is decorated floor to ceiling with Kiss posters, Kiss key chains, and Kiss figurines, some of which are three-feet-high and play the band’s more popular songs at the push of a button. One of the posters shows the cover of the band’s eleventh album, with the title, Lick it Up, front and center. On the bed, a teddy bear dressed in a Chargers jersey and an episode of the 1980s sitcom Full House paused on the TV add sweet and incongruous touches to the rock and roll décor. After shaking my hand with the firmness and efficiency of a company president, Patrick shows me his latest Kiss finds.

“Cups, a chips bowl,” he says, pointing out mugs and a large bowl adorned with the devilishly dressed men. The chips bowl is one of those with an attached container for dip. A Kiss jack-in-the-box sits on the shelf, and Nocon informs me that Patrick also has a Kiss costume he wears for Halloween and other dress-up occasions.

When he points out a large photo of himself with Gene “The Demon” Simmons, he and Nocon argue about when the photo was taken.

“Wasn’t that about two months ago?” Nocon asks.

“No, five months,” Patrick says.

“It wasn’t five months was it?” she says. “Wasn’t it around Christmas time?”

“No, September,” he says.

Turns out Patrick’s right. And when Nocon asks him to tell me where he works and how long he’s worked there, he speaks quickly and with his hands on his hips, as if he’ll tolerate our questions for only a moment or two more.

“Vons and McDonald’s,” he says. “[Since] ’87, McDonald’s, and [since] ’95, Vons.”

Like Patrick, all of the residents at Noah Homes spend their days out in the local San Diego community, working or participating in programs through St. Madeline Sophie’s Center in El Cajon where they take art, communication, or computer classes. Some residents hold jobs at places such as Lakeside Nursery, Albertsons, and Pizza Hut. Others perform contract labor putting together Cox cable kits or packaging mobile phones. Noah Homes owns 16 vehicles and a bus, which they use to transport residents to their jobs, classes, Padres and Chargers games, SeaWorld, and as far away as Disneyland and Las Vegas.

Program director Sandra Rocco-Melville has worked at Noah Homes for 27 years.

Program director Sandra Rocco-Melville has worked at Noah Homes for 27 years and believes spending time “with the larger community is the essence of quality of life.” She speaks to me over the phone on her way back from a four-day cruise to Catalina and Ensenada with Nocon and seven female residents.

“It was great to see how on that cruise the public embraces us,” she says, “because our folks always look good and dress nice and are always polite, and they use their manners, and they’re fun.”

The Down syndrome-Alzheimer’s connection

“Down syndrome is the most common genetic disorder in humans and the leading cause of intellectual disability in the world,” Dr. Michael Rafii, clinical director of the UCSD Down Syndrome Research and Treatment Center, tells me by email. “People with Down syndrome also represent the world’s largest population of individuals destined to develop Alzheimer’s disease. Every individual with Down syndrome develops Alzheimer’s disease pathology in their brain by age 40, and virtually all show signs of dementia by age 60. With people living longer, including those with Down syndrome, we are seeing a dramatic increase in dementia cases in this already at-risk population, necessitating greater support.”

In November 2013, Dr. Rafii and his team began baseline testing on a small pilot group of 12 participants and markers of Alzheimer’s disease (including two from Noah Homes) before they develop dementia. The team conducted imaging tests as well as cognitive tests for memory, attention, and movement.

“The overall goal of the research project,” Rafii explains in a video on the UCSD Department of Neurosciences website, “is to better understand the relationships between the biochemical, genetic, neuroimaging, cognitive, and clinical measures of the entire spectrum of Alzheimer’s disease in adults with Down syndrome.”

According to Nocon, one third of the residents at Noah Homes have been diagnosed with Alzheimer’s. Patrick is among them. At present, the youngest of those diagnosed is 38.

Victory

Two years ago, Molly Nocon appealed to the State of California, seeking a funding mechanism to manage the aging and dementia care needs of her residents. She wanted two ten-unit buildings. She offered that Noah Homes would build and furnish them if the state promised to fund at a level that would keep her in the black.

“Currently, the minute I accept a resident, I am losing $3500 a year to take that resident in the door,” she says. “So our board steps up and raises between $300,000 and $400,000 a year to maintain our quality of service. I said to the State, ‘We can’t do that anymore. We’ve exhausted our donors, we’ve exhausted our resources. We can’t do any more than we’re doing now.’”

In response, the State formed a task force on aging at San Diego Regional Medical Center and sat down with Nocon and representatives of other agencies to determine those needs.

“We all said the same thing,” Nocon says. “We need more staffing to help them eat, to help them dress, to help them spend 15 minutes to walk across the threshold because something in your Alzheimer brain says if I cross that barrier right there, I’m going to hurt myself.”

The task force determined that there was nothing in place to help meet the needs of this particular population. All of the freezes in place prohibited the most simple solutions, such as increasing the funding level of residential units already in existence. They identified over 200 people among three or four agencies that would qualify for these units immediately, but instead, if moved, they would be placed in nursing homes. Instead, Noah Homes and other agencies have absorbed the cost of increased care themselves.

“We’ve all been holding on to these people,” Nocon says. “Staff are injuring themselves and other people in the house don’t get to be as active because we’re holding onto people who are now in wheelchairs, and we don’t have enough staff to take everybody out, so we have to take them out in sections or we have to try to get volunteers to come help us because the state won’t increase the funding to give us that extra staff.”

Currently, Arc of California (an advocacy group for people with intellectual and developmental disabilities) and United Cerebral Palsy San Diego have a lawsuit filed against the State of California asserting that the State violates the Lanterman Act with unjust rate system and illegal rate cuts.

“You can’t just make an arbitrary cut, you have to quantify it,” Nocon says. “They can’t because it’s all been random for the last ten years.”

In the midst of this struggle for funding for their general population, two days before my visit to Noah Homes, Nocon received word from the County that they have the green light to start building the two ten-bed buildings that will house the country’s first free-standing dementia care unit for adults with developmental and intellectual disabilities.

“We’ve had those two buildings on our plan for 25 years. The state refused to fund them [for the general population],” Nocon says. “After going through this aging committee and talking and going to Sacramento [monthly] and bringing that message across, [the State has] agreed that the need is so severe right now that they will fund us at a level that keeps us in the black, so that’s a huge step forward.”

For the past 30 years, Noah Homes has built and expanded without incurring debt. The board recently reaffirmed its intention to remain debt-free through the $3- to $5-million building project.

“It makes it a little tougher, but in the end it makes us financially very strong and able to endure a fragile and changing economy,” Nocon says.

The organization may have to delay construction time until the funds are in place, but Nocon is optimistic that the buildings will be complete within three years. According to projections, current Noah Homes residents will fill six of the 20 beds available. The rest will be open to other San Diego Regional clients.

“I’m gonna love it here!”

Back at the Sweethearts Ball, the room fills with the scent of fried chicken. A woman makes an announcement over the microphone that the staff will serve the residents at their tables. Out in the hallway, a group of staffers fills plates from one side of a long table spread with chicken, mashed potatoes, dinner rolls, and salad. On the other side, more staff and volunteers hold out plates to be loaded, which they then bring to the seated residents. Patrick and his lady continue to sway on the dance floor.

Richard

A gregarious man named Richard, whom Nocon refers to as the Ambassador and whom I met yesterday, waves me over to the table where his housemates sit. He introduces me to his girlfriend Betsy and a 30-year-old roommate hopeful named Tim.

Although Richard refers to Tim as his roommate, Tim is still on the waiting list. They know each other from Lakeside Nursery, where they both work. There’s an opening in Richard’s house, and Tim fits the profile. He’s been invited to the dance, and next weekend, he’ll come for what’s called a respite weekend, where he’ll stay a couple of days to see if he’s a good fit for the opening, and to see if Noah Homes is a good fit for him.

Tonight, Tim is dressed in a suit and tie, and the smile on his face is magnetic.

“I got a call on Wednesday,” he says with joy. “They picked me!”

He looks around the room, and then after a beat says, “I think I’m gonna love it here!”