Valley Nurse Is Honored for Work With Disabled

As head nurse at Northridge Hospital Medical Center’s rehabilitation unit, Mary Williams smiled and waved and cried on days when spinal-cord injury patients left the unit for the last time.

She had watched numerous quadriplegics and paraplegics struggle through months of intensive therapy, straining toward their goal to go home someday.

And when that day arrived, like the patients, relatives and staff nurses, Williams got caught up in the emotion of the moment.

“We were all so happy,” said Williams, in a lilting Welsh accent. “They had come so far in the rehab center and were going home.”

Still, Williams was curious about her former patients’ well-being once they got home. She drafted a questionnaire asking patients about their relationships with family, level of care and other quality of life issues.

“I called it my ‘happily ever after’ sheet,” said Williams, who led the rehab center from 1976 to 1982. “I wanted to know how they were getting on.”

Feelings of anger, frustration, depression, stress and resentment dominated former patients’ responses, Williams said. Through further interviews, she learned that spouses were taking on the roles of primary caregiver, arbitrator, equipment manager and supply clerk in addition to caring for children and working full-time jobs.

“It was not the great story I had expected,” she said.

The abrupt transition from hospital to home dealt a serious blow to family life, Williams discovered. Spinal-cord injury patients had come to rely on round-the-clock expert care, while family members were taken aback by the demands of constant care-giving.

“We were setting up families for failure,” Williams said. “We had to do something so that these wonderful families wouldn’t be destroyed.”

With that thought in mind, Williams pioneered the concept of a halfway house where spinal-cord injury patients would learn about their care, medications, equipment and, most of all, how to communicate their needs to caregivers.

At the halfway houses, disabled people learn to live as independently as their injuries allowed to avoid being placed in a nursing home or other inappropriate institution.

More Halfway Houses Expected to Open

Williams, 58, of Encino founded New Start HealthCare Inc. in September 1982 and launched her first halfway house in June 1983.

Earlier this month, Williams was honored for her work by the U.S. Department of Health and Human Services’ Centers for Medicare and Medicaid Services. She was among seven health-care providers from the agency’s San Francisco region to be awarded the 2001 Beneficiary Services Honor in St. Louis.

Federal officials cited Williams’ halfway houses--which now number 10 in the west San Fernando Valley--as a model for similar houses nationwide.

More halfway houses for people with disabilities are expected to open in the wake of the 1999 U.S. Supreme Court decision requiring states to provide community-based services for disabled people, including transitional housing.

The so-called Olmstead case was brought by two Georgia women whose disabilities include retardation and mental illness. At the time the suit was filed, both women lived in state institutions, despite the fact that their health-care providers had determined that they were capable of living independently.

The women asserted in the suit that continued institutionalization violated their rights under the Americans with Disabilities Act, which calls for disabled people to live in the most integrated setting appropriate to their needs.

“Nearly two decades before Olmstead, Williams [had] a plan to set up homes in the community where quadriplegics could live and learn independence skills,” wrote Jack Allison, a quadriplegic and former New Start client, in his letter nominating Williams for the award. “The rest of us now see what nurse Mary Williams saw two decades [ago].”

Rocky Start for Fledgling Business

Williams said she faced numerous challenges in establishing and maintaining the halfway houses.

After a series of inspections in August 1987, state health department officials ordered the houses closed because of improper staffing and inadequate food. Fire officials also said four houses lacked emergency exits and pathways.

New Start lawyers and Medi-Cal officials eventually reached an agreement to allow the homes to remain open while the problems were resolved.

To pay for the improvements, Williams and her husband, Vincent, sold their home and put the money into the operation. Fund-raisers were held and private donations were solicited, bringing in $50,000.

Williams also was accused of operating the houses without a license. But because no such facilities existed before there was no way for her to apply for a license.

Williams lobbied former state Sen. Cathie Wright for legislation regulating halfway houses for spinal-cord injury patients that eventually became the Congregated Living Health Facilities Law in 1987.

“Today, disabled people have more independent-living options once they are released from rehabilitation centers,” Williams said. “There are so many more doors opened to them.”

Janette Knudson, 42, of Chatsworth, took advantage of that opened door when she moved into a New Start halfway house in Chatsworth after she was released from the rehabilitation unit of Providence Holy Cross Medical Center in Mission Hills in 1993.

“The absolute miracle is that I was close to discharge with really nowhere to go and Mary Williams walked into my room and told me about her program,” she said, sitting in her wheelchair in her living room. Knudson was estranged from her husband and her family lived in her native England.

Patient Grateful for Independent Living

Knudson, 42, said she cried when Williams said the single mother would be able to care for her daughter, Jenna, who was then 3 1/2 and in foster care.

“The hardest part was the separation from her,” she said, “and not knowing that I could care for her again.”

Today, Knudson and her daughter, now 12, live together, a gift Knudson said she can never repay.

“I would do anything for Mary. I would go out of my way to pay back what’s been given to me,” she said. “I learned to become dependent upon myself. It is empowering to have an independent life.”