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When Aging Parents Can No Longer Care for Their Disabled Children

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SEATTLE - Delia Cano's body no longer moves as easily as it used to, so now she's had to do something more painful than the perpetual aches in her bones: Give up primary care of her daughter.

At 78 years old, she can no longer take care of her developmentally disabled daughter on a full-time basis. So she has arranged for her daughter, Guadalupe, to move into an apartment in Shoreline, Wash., with two other women. She wants her to learn to live independently.

"I don't want for her to leave home, but I'm getting old. When I die or when I'm much older and won't be able to take care of her, she needs to have her own place," Cano says.

During the last week of July and the first week of August, Guadalupe "Lupita" Cano and Martha Hinojosa, both 34, and Florence Ulrich, 43, moved into their new apartment. The three women are different in many ways, but in some they are alike: They all have Down syndrome, and their parents have become too old to take care of them.

Experts agree that caregivers must realize their own mortality and plan for what will happen to their dependent adult children or family members once they've passed away.

The best approach is to have a variety of choices, because no single approach will work for everyone.

Options include moving into shared housing or into a home with supervised care, moving into the home of a younger relative, or seeking respite care. Cano, Ulrich and Hinojosa decided to move into shared housing.

Lani Scheman, a case manager for the Department of Social and Health Services' Division of Developmental Disabilities, put the three women together because they have similar needs: Ulrich and Hinojosa have diabetes, and Cano is borderline diabetic.

In addition, "The families liked each other. It was just a really good combination."

Arranging for the move took more than a year of planning and coordinating among a variety of agencies and support services.

One crucial issue was selecting an agency to serve their daily needs. In early 2003 they settled on Banchero Friends Services, an organization that helps adults with developmental disabilities run their lives.

Finally, on July 26, the three women moved.

The feeling of having their own apartment and being on their own transcends the complications they've faced in the process.

Heather Paul, Banchero's program manager, remembers Ulrich's reaction to getting the key to the front door.

"Yes! I have my own key to my own apartment!" Ulrich shouted.

"I've never seen somebody be so happy to have their own key to their own apartment," Paul says.

On a recent sunny Monday afternoon, Cano stared intently at the television screen. Her favorite show, "Sabrina, the Animated Series," was on. She was relaxing after her day volunteering at the arts studio in the Center House in Seattle Center.

Ulrich had just returned home from the Eastside Adult Day Center in Bellevue, Wash., where she spends three days a week doing arts and crafts, singing and playing bingo. Hinojosa arrived soon after, from her volunteer job at the Children's Museum.

"I'm so happy now I moved with the two girls," Hinojosa says. "Lupita is my oldest friend. We planned to live together since we were little girls."

Lupita and Martha were 2 years old when they attended the first University of Washington class for children with Down syndrome in 1971.


That program paved the way for Cano to break stereotypes later in life. Cano's extraordinary accomplishments have been documented over the years in a variety of local publications. In 1997, The Seattle Times wrote a story about Lupita's plan to move out on her own. The idea proved too daunting then. Instead, she and her mother, Delia, created a home inside a home: They renovated the basement to make it seem as if Cano was really on her own.

In addition to her volunteer work, she is a businesswoman and an artist with a lifelong love of painting.

With the help of family and supporters from the Division of Vocational Rehabilitation, last year she launched a greeting-card company featuring her original artwork. She named the company A.E. Designs, after her favorite character, Ariel, of Disney's "The Little Mermaid," and her long-term boyfriend, Eric.

The first order for 500 cards sold out quickly.

The cards are available in several Seattle neighborhood stores, including Best Regards in Ballard, Frame Up in Fremont, Flourish Greetings in Wallingford and Queen Anne Office Supply and Stationery.

After a few weeks at the apartment in Shoreline, the three are settling into a routine.

"This is brand-new for them. From experience, it takes a good six months to a year for people to get into the groove," Scheman says. "They've got a big learning curve, which of course is hard if you have a developmental disability."

Buzzing about the apartment on a sunny Monday afternoon were Cano's mother, Delia, and the program manager Heather Paul.

Rama Mboob, their caregiver, was cooking their dinner, to be served promptly at 5 p.m.

Ulrich, when asked why she likes the new living arrangement, replies, "We eat together, the three of us."

Mboob, who visits the women five afternoons a week, notes that they also do chores, such as washing the dishes and vacuuming the living room.

"They crack me up. Everybody has something to say," says Mboob.

The three women rely on public transportation to get them where they need to go. Hinojosa takes the city bus by herself, Cano takes the ACCESS bus (public transportation for the disabled and the elderly) and Ulrich either takes ACCESS or Medical Transport Services.

They're also learning from each other. Hinojosa took a class on diabetes when she was younger and is able to administer insulin shots to herself. Ulrich never learned how, but Hinojosa is changing that.

"I like to help Florence learn about blood sugar," she explains.

Hinojosa's older sister, Sandra, calls her a social butterfly who is often too busy to call home. Covering a bulletin board in her bedroom are 18 Special Olympics medals. She can spit out facts about Gary Payton, her favorite basketball player, and a replica of his old Seattle Sonics jersey hangs on her bedroom wall.

"He's born the same year as me," she says.

Aside from their volunteer work, the women spend their day "doing girlie-girl stuff," according to Cano.

Ulrich is known for her love of country music. The Judds are her favorite musical group, and her hot pink cassette-tape case is full of country music albums, including seven by the Judds. The news of Johnny Cash's death greatly saddened her.

"I was singing his music," she says. "That's my guy."

The move has also been a test for the three women.

"Since moving in together, they're learning to respect each other's space," acknowledges Paul. "They've bickered."

One of the latest altercations, between Cano and Ulrich, resulted in the creation of house rules.

The rules, taped to the wall over the dining table, include apologize and forgive, touch in friendship only (meaning handshakes and hugs, rather than pushing), and be happy and healthy.

While the women are excited to begin a new adventure, the transition has been bittersweet for other family members.

"We were best friends," Delia Cano says. "We lived together. We traveled together."

And Lupita was also her mother's teacher, says Cano, who came to the United States from Peru in 1957.

"My English is not very good, and I learned from her a lot of English," explains Cano. "The whole thing is so hard. This is the hardest decision I ever made in my life."

Ulrich's mother also has had a difficult time with letting Florence move into her own home.

"I had to let her go because I'm sick," says Wadia Ulrich, 80.

Ulrich, who lives in Seattle's Ballard neighborhood by herself now, explains that her age and her condition haven't left her much choice. Her osteoporosis has worsened in the past four years, and she can hardly walk. She can't take care of her daughter.

"I miss her," says Ulrich. "I always took care of her."

Hinojosa's sister Sandra, 38, has been Martha's primary caregiver since their mother was hospitalized with tuberculosis three years ago.

"I've always known, even as a child, that one day she would be mine to take care of," Sandra says.

The entire Hinojosa family misses Martha, but Sandra believes it's for the best.

"We went and visited Banchero, and I just saw how great everything is there, and it amazed me that she would have that kind of support in learning to be an independent person," Sandra says. "The support she's getting to learn new skills is much more than I could ever do for her."



According to The Arc, a national nonprofit advocacy organization for people with developmental disabilities, about 1.9 million developmentally disabled individuals live at home or with a family caregiver. About 25 percent of these caregivers are age 60 or older. In Washington state, there are at least 1,230 individuals with developmental disabilities living with caregivers who are older than 60.

Down syndrome, a developmental disability associated with mild to moderate mental retardation and a cluster of other symptoms, occurs in 1 in every 800 to 1,000 live births.

Individuals with Down syndrome generally have a life expectancy 15-20 years shorter than the general population, according to The Arc. However, their life expectancy is increasing as medical technology improves.


(c) 2003, The Seattle Times. Distributed by Knight Ridder/Tribune News Service.

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