Fact Time • A magnifying mirror allows Carol Harvey – who’s visually impaired – to see her face. It’s one of a number of adaptive devices she received through DES.

Berdine Bernal grew up taking care of herself. The polio she contracted as an infant did little to slow her down.
She began driving at 18. She went to college. She got married. She had a baby.
Then she lapsed into post-polio syndrome. The good muscles in her upper body began to weaken. She still drove, but became increasingly reliant on her husband for help getting in and out of the car. And to help get around her house in Ahwatukee.
That lasted as long as the marriage, which fell apart after 30 years.
Bernal, 58, faced the possibility of going into a nursing home. But she most wanted to be independent in her own house again. 
Help existed. The Independent Living Rehabilitation Services is tucked away in the huge bureaucracy known as the Arizona Department of Economic Security. But as Bernal and others have learned, ILRS is well-kept secret.
“I just started calling anything I could think of,” she says. “It was just hit and miss.”
She eventually dialed DES. Even then, the first time she called the agency, she was unable to hook up with independent-living services. She called again. She finally reached someone who could help her.
Bernal’s story is common. Others like her have experienced the frustration of trying to find a starting point in the bureaucratic maze, and then of navigating it.
Bernal might have reason to be bitter, but she doesn’t sound like it. Bernal is upbeat and cheerful. And by all appearances, her persistence has paid off. Bernal has regained the independence she once had, and lost. Newly installed ramps and a power wheelchair restored some of the mobility taken by post polio.
Cold, economic reasons
For society, there’s a cold economic advantage in promoting independent living —that is, keeping people with disabilities out of nursing homes, if possible.
Ed House, a manager in DES Rehabilitation Services Administration, says nursing-home care typically costs more than $4,400 a month, based on 2006 statistics. In-home services run less than $2,000 a month, he says.
There’s a philosophy behind independent living as well, House says. It’s the idea that people with disabilities have a right to self-determination in their own homes and in the community.
“The central issue is they have more control over their lives,” House says.
DES receives some $3 million a year from the state for independent-living services. The money, in part, goes to help people like Bernal, as well as the blind and visually impaired, and people with severe brain and spinal injuries. DES provides in-home services for more than 1,800 people who are blind and another 500 with other disabilities
What the state gives, though, the state can take away. And budget cutters are looking high and low to shake out anything that could help plug the fiscal year 2009 deficit. For now, the independent-living budget faces no big cuts, those who follow the money say. Any cuts, however, would hurt a program with a big waiting list, as the needs already outstrip available resources.
And there’s no guarantee big cuts will be avoided. Budget talks continue, and not much is certain.
One thing is certain: DES will not get a bunch of new money to advertise services such as independent living. The agency does get some funding for public-information campaigns, specifically geared for people with spinal and head injuries. It also receives referrals from other social-welfare groups.
Many individuals, such as Bernal, have to rely on their own doggedness.
Their very disabilities, however, make it difficult to find help in the first place, says Edward Myers, chairman for the statewide Independent Living Council, a federally mandated group whose members are appointed by the governor.
“They might be very isolated. A lot of them might not get the information because they can’t even get out of house,” says Myers, also director of litigation for the Arizona Center for Disability Law.
DES is taking one small step to make its independent-living services easier to find. Frontline DES operators are being trained to direct callers who need services to the right place, House says.
That doesn’t mean the agency’s independent-living counselors have been sitting around waiting for the phone to ring. DES has just two independent-living counselors serving Maricopa County and some outlying areas. They have plenty of work.
First visit
 One of them is Susan DeNova. With about 70 clients, her calendar is booked. Once she gets a referral, it could take weeks or months before she can make an initial visit.
She finally got in touch with Bernal back in 2005.
On DeNova’s first visit, Bernal says, “she went around the house and asked me what I wanted to do. I didn’t have any grab bars anywhere. I didn’t have any of those adaptive devices.”
So grab bars were installed. They help Bernal balance herself in the shower, where she uses a special wheelchair provided by DES. Newly installed ramps give her easier access through the front and back doors and —for the first time —to a sunken living room. Extra handles on doors make them easier to close. Special hinges let them swing away from the door jambs, providing more clearance.
These devices make a big difference, as DeNova well knows.
“I use a wheelchair myself,” says DeNova, who has cerebral palsy.
Aside from understanding her clients’ practical needs, DeNova makes an emotional connection as well.
“I think it’s easier for me to relate sometimes, and people feel more comfortable talking to me because they feel that I feel what they’re going through,” she says.
An occupational therapist who accompanied DeNova suggested that Bernal check to see whether insurance would pay for a power chair. With post-polio syndrome, powering her own wheelchair was becoming increasingly difficult.
Bernal got the power chair. To her, it was a lifesaver. Mobility is a key to independence. 
DES paid for modifications that made her handicap-accessible van easier to drive. Her newfound independence has since taken her to points west —way west.
“I’ve driven to Los Angeles and back,” Bernal says.
Markedly different
Like Bernal, Cindy Knudsen, 40, is confined to a wheelchair. But the cause of her disability is markedly different. Eight years ago, she suffered severe brain damage in an auto accident. On a recent morning, she sat in the living room of her parents’ house in Queen Creek to discuss her disability and the help she’s been able to receive.
Her parents, Barbara and Jay Smith, did most of the talking. Knudsen, however, occasionally spoke up, using a speech program in the laptop resting on her wheelchair.
Seated on the carpet, Knudsen’s daughter, Courtney, played with her own 14-month-old son. Courtney is Cindy’s paid assistant, through a contract with the Arizona Health Care Cost Containment System.
Speaking of Cindy Knudsen, Barbara Smith says, “She couldn’t do anything for herself.” To prevent her from getting bed sores, she adds: “I had to roll her over in bed at night.”
Before meals, their daughter’s food had to be put through a blender.
“It was a full-time job for both of us,” Jay Smith says.
The Smiths eventually saw
a newspaper article about the Bridge to Independent Living.
This is one of a number of independent-living centers mandated up by federal law. It takes care of many clients through contracts with Medicare and another health insurer, says Phil Pangrazio, executive director of Bridge to Independent Living.
With help from the organization, the Smiths found the DES independent-living services.
“We do similar things.” Pangrazio says. But he adds: “Funding is so limited in these programs, there can never be enough.”
Knudsen hit it off right away with her independent-living counselor, DeNova.
“I love talking to Susan. She’s just full of energy and ideas,” Knudsen says, typing her response on a keyboard connected to a computerized audio program.
DeNova’s ideas included installing a strap in Knudsen’s bed. By pulling on it, she can roll herself over.
In addition, the front walk was widened and raised to create a permanent ramp to the front door. In the kitchen, Knudsen helps prepare her own meals, with the aid of a specially designed cutting board.
But she’s not stopping there. She plans to take independent-living to the next level, in time.
“I am going to walk,” she says.
Comfort and bruises
Carol Harvey, 56, cannot make the same bold claim when it comes to her blindness. Chances are she will be legally blind the rest of her life.
“If I could run away from this, I would. I can’t,” Harvey says.
As a child, she lost vision in one eye. As a cancer patient last year, she lost the vision in her other. She has peripheral vision, and can make out light, dark and color.
Harvey talks about independent living from her kitchen table in east Mesa. She walks to and from the kitchen as easily as those without vision impairment.
“My comfort zone is this house, and I’ve got the bruises to prove it,” Harvey says.
Outgoing and garrulous, she laughs easily. But her life changed profoundly when she lost her sight.
“I thought the worst thing was not being mobile,” Harvey says. “But the worst is not being able to read. I lost my privacy. I needed somebody to read my bank statements.”
On top of that, she had three school-age children to rear. Her husband died a few years ago.
She had no idea what to do next. At first, she was unaware that DES had offered independent-living services for the blind.
Until this year, funding for blind in-home services was scant. Last session, though, the Legislature approved an additional $500,000 to help the blind and visually impaired, folding it into the 2008 independent-living budget.
But the chairmen of the House Appropriations committees, Republicans Sen. Bob Burns and Rep. Russell Pearce, recommended the money be returned to the general fund to erase some red ink. That proposal, in turn, got the attention of National Federation of the Blind of Arizona.
“That’s a vastly underserved group of people,” federation president Bob Kresmer says. “That half-million was important to us.”
At the moment, Kresmer remains optimistic that the money will be spared, based on his discussions with other lawmakers.
As for Harvey, she got some got advice from a friend in North Carolina, who suggested she call the state welfare agency —DES. After finally reaching somebody who could help, Harvey was put on a waiting list. She became another case in an underserved community.
“I had to wait eight months, thinking nobody cared,” Harvey says. 
In December, a DES rehabilitation teacher finally made a house call.
“One of the first things she did —I’m almost emotional talking about it —she listened to me,” Harvey says.
Once again, independent living was a matter of simple devices. Alternating black-and-white sticky tabs on Harvey’s cellphone keypad let her distinguish one button from another. Dabs of bright red paint on stovetop knobs and the thermostat allow Harvey —through color contrast —to determine proper settings. Her oversize wristwatch has large white numbers against a black face. It’s a matter of contrast.
The same principle applies to coffee cups.
“If I have a black coffee cup, then I’m not going to pour coffee,” Harvey says.
For reading, a scanner projects large-print words onto a TV screen —against a high-contrast background. A talking alarm-clock announces the time. With a specially shaped mirror, she can now see her face.
Independence also means learning to use a cane. A DES mobility expert helped with this. Crossing the street was frightening enough when she was sighted, Harvey says with a laugh. Now she crosses with a cane, and with a growing sense of confidence.
It’s the confidence that comes with taking charge of her own life.
Her independence isn’t complete, however. She relies on friends for transportation. It’s partly a matter of geography. Harvey lives in east Mesa.
“I’m three-quarters of a mile outside Dial-A-Ride,” she says. ≠