Angels WITH WINGS OF LEATHER.

Motorcycle enthusiasts with a desire to help others have brightened the lives of some profoundly disabled children and young adults

Thanks to sensational Hollywood "biker" movies and the real-life antics of certain highly visible motorcycle "gangs" of the fifties and sixties, some people hold a dim view of all motorcycle clubs. That perception turned out to be a blessing in disguise for residents of a specialized pediatric long-term care facility in Illinois. Fourteen years ago, after their offer of fundraising assistance was turned down by two other nonprofit organizations, the Harley Owners Group of Elgin (Illinois) adopted Little Angels, a 55-bed skilled pediatrics facility licensed for the care of residents 21 years of age and younger with profound disabilities and complex medical needs.

It's been a match made in heaven. In the 14 years since the club started holding fundraisers for the facility, the Harley Owners Group of Elgin has amassed $1.9 million for Little Angels--enough of a boost to allow the organization to build a 17,000-square-foot, state-of-the-art addition to its existing 1963-vintage building last year and to provide upgrades to the older building over the years.

Little Angels was founded by Pat Wasmond, a nurse and mother of 11 children who wanted to help support her family and, at the same time, wanted to make a difference in the lives of children who needed special care. It started when she began caring for a severely disabled child in her home--the child of a physician with whom she worked at a local hospital. Soon more and more children were referred to her for care. In 1958 she purchased the home next to hers, and Little Angels was born. A larger (8,000 square-foot) building was built in 1963, and in 1976, Wasmond's daughter, Shelley Lewis, took over as administrator of Little Angels. Her mother still comes back to visit the children and "enjoy the fruit of her labor," Lewis says.

Little Angels receives most of its referrals from area hospitals. Referrals also come from aging parents who can no longer care for their children at home and from other families in the community. Its caregivers have a unique challenge, because all the residents are nonambulatory, nonverbal, medically fragile and classified as profoundly mentally retarded. They all require 24-hour care and supervision.

"Our goal for these children is to provide an environment where they can thrive physically and emotionally in a loving, homelike setting, so that they can enjoy life and participate to the fullest extent possible," says Lewis. She emphasizes that while the work is challenging, it is extremely gratifying. "Recently I attended the funeral of one of our residents, a 10-year-old girl who had passed away," Lewis recalls. "Of course it was a sad occasion, but as I viewed the photographs of her that her parents displayed at the service, it reminded me how happy she was in our facility. In one photo she was decked out in her Halloween costume. That photo brought back such warm memories of her--sitting with her brother at that party, grinning from ear to ear. Despite her medical frailty, her smile said it all. She was able to experience joy despite her physical problems. That's what we want for all our residents."

Lewis explains that operating a skilled pediatric facility is in many regards different from operating a skilled nursing facility for a largely geriatric population. "Because of the ages of the residents in a regular nursing facility, sometimes you can't escape the feeling that that you're caring for people who are simply waiting to die. Here, we are endeavoring to keep the atmosphere upbeat, to provide our young residents with reasons to live."

Some of the challenges the facility faces are vastly different from those encountered in regular nursing homes. Says Lewis: "The regulations governing us are geared toward rehabilitation and developmental training. The medical and rehabilitation components of these regulations are extremely complex, so trying to blend them with the actual needs of our profoundly disabled residents is difficult. What our residents need, in fact, is habilitation, not rehabilitation."

Lewis adds that some of the rules and regulations do not serve the population of Little Angels terribly well: "Federal ICF-MR (Intensive Care Facility for the Mentally Retarded) regulations require that we provide training in Activities of Daily Living. For example, we have to spend a specified minimum amount of time trying to toilet train residents--even those for whom toilet training is never going to be possible." Lewis says that in an effort to counter these regulatory mismatches, facilities like Little Angels, in partnership with the American Medical Directors Association (AMDA), are working to get the federal regulations changed.

Other difficulties encountered at facilities like Little Angels reflect what's happening in the skilled nursing field overall--for example, dealing with inadequate funding. Little Angels is 100% funded by Medicaid and, according to a source quoted in a recent edition of the Chicago Tribune ("Code Blue for Illinois Medicaid," April 15, 2001), Illinois is "one of the most inadequate Medicaid payers in the country."

The facility is also struggling to maintain staffing levels despite a shrinking labor pool. The labor shortage hits facilities such as Little Angels especially hard, since they need to have twice the direct-care staff as the geriatric-oriented nursing homes in their area. "This is because our residents are 100% dependent," says Lewis, "and their medical needs extremely intense. We currently have a staff of about 75 full-time and 25 part-time employees to care for 55 residents."

Little Angels hires nursing staff who already have their CNA certification and then provides additional training--extensive in-house orientation designed to prepare them to care for the special needs of the facility's special population. According to Lewis, "CNA training is great for the physical and medical side of things, but we generally need to fill in the blanks on the habilitation side."

In addition to its specially trained staff, Lewis says Little Angels needed a special design for its facility upgrade--both for the existing building that would continue to house the younger children and for the new building that would house the young adults. Lewis emphasizes that these improvements never could have happened without the generosity of the Harley Owners Group of Elgin. The remodeling of the existing building--the exterior of which now matches the new addition--was started two years before the addition was built. It involved adding a new HVAC system, insulation, siding, new windows and a new, pitched roof, at a cost of $500,000.

The 17,000-square-foot addition for young adults (18 years and older) totaled $2.4 million. It was needed because, although they enter the facility when they are 21 or younger, residents are not required to move out as they grow older. According to Lewis, 32 of 55 residents are more than 22 years old, and the oldest is 48. "This is their home," she says, "and there's really nowhere for them to go as they age."

"Our goal for the remodeling and new construction projects was to make our facility more homelike and functional," Lewis says. She explains that regulations interfered with that to some degree: "We wanted people to be able to come into our facility through an entryway, into a living room and family room, but the physical-plant regulations forced us into a more institutional layout.

"We also wanted to place the living areas farther from the bedroom areas but, again, regulations didn't permit it, stating that the living areas must be under the direct visual control of the nurses' station. We were able to negotiate this regulation when we explained that our residents are under constant supervision anyway, no matter where in the facility they are."

Those weren't the only plans for the new addition's design that had to be negotiated with regulators. Lewis says, "For example, the regulations called for regular doors to the bathrooms, but we've found that since all our residents are nonambulatory, privacy curtains work better with the lift equipment we must use. We had to convince the state of that, as well.

"Also, we have found that for the level of care we provide and the needs of our population, the most workable bedroom configuration for monitoring and supervising our residents is four to a room. The typical semiprivate room simply isn't suitable for what our residents require; the nursing staff would be running from room to room 24 hours a day and still be unable to provide all the care that's needed."

To deinstitutionalize the look of the bedrooms, the interior designer of the addition, Rebecca Gerndt of Sunrise OneSource (see sidebar, "A Youthful Design for Youthful Residents") designed the rooms with two alcoves, each of which holds two beds. Lewis says this gives the four-bed rooms the feel of semiprivate rooms. Each bedroom has an adjoining bathroom, shared with one other bedroom. Privacy curtains are used to give residents more of a sense of "their space."

Lewis can't say enough about how pleased she is with the Little Angels addition and the upgrades to the previously existing building. "After only six months, we've been amazed at the impact the new environment has had on the quality of care. We had struggled in our old building for a long time. Now we have better medical outcomes and improved infection control (because of the improved air circulation with our new HVAC/air exchange system), and staff morale and family satisfaction have risen, as well. It's made all the difference in the world. The day the Harley Owners Group came our way, someone else's loss was definitely our gain."

A Youthful Design for Youthful Residents

Administrator Shelley Lewis knew Little Angels couldn't afford to hire an interior designer to decorate its new addition. But when she learned that Sunrise Medical Continuing Care's OneSource interior design department offered its services for free, she jumped at the chance to bring in professional help. She says that the facility--and the residents, their families and visitors--are thrilled with the outcome.

"We wanted a bright, cheerful environment," Lewis explains. "We wanted it to be visually stimulating and not childish; we got exactly what we asked for."

OneSource interior designer Rebecca Gerndt describes the process: "We worked to create a fun, motivating environment, full of color stimulation. Shelley said she wanted a contemporary look, and that's what we tried to achieve."

She adds, "One key design feature was creating four different 'looks' for the resident rooms, using different wall coverings and borders. We didn't want all the rooms to look exactly the same. Also a plus were the large windows the architect designed, facing the interior courtyard. They give the activity room such an airy feeling. Combine that with the ceiling treatment (soft pastel colors and brightly patterned borders) and the fun colors of the walls and furnishings, and we achieved our goals."

Linda Zinn