When Barbara McGoldrick decided to find more congenial living arrangements for her 36-year-old son Steven, who was languishing in a nursing home among residents almost twice his age, the Oak Brook, Ill., woman felt she was just being a good mother. She never thought of herself as a trailblazer. But that's what she became.

For in pursuing her goal she not only got her son better living conditions, she also helped promote alternative residential housing for the state's other adult children with mental illness, places where they could retain their dignity and lead lives as normal as possible.

It all started when Steven was hospitalized and lost his place in a group home. As often happens when there is a lack of affordable options, he was placed in a nursing home after discharge. The restrictive lifestyle depressed him, worsening his condition.

"I'm a full grown man and want to be independent," he told his mother.

McGoldrick helped give him that chance by purchasing a home for him under a Special needs Trust (SNT) and arranged for a long-term, low-interest mortgage loan with a local bank.

SNTs let parents put a down payment on a home for an adult child with mental illness and manages the resources without disqualifying the beneficiary for government aid (see box at right).

This allowed McGoldrick to obtain housing vouchers from the U.S. Department of Housing and Urban Development (HUD) to pay for the home's monthly rent and upkeep.

But the main component of her four-year projects—getting state funds to staff the home and provide services for the residents—called for the intervention of an angel, McGoldrick said. The services included complete coverage for psychiatric care, therapists, a daytime staff, and a range of social programs.

Everyone she approached was wary of ever being able to get state funds to staff the home except Trinity Services of Joliet, Ill., a nonprofit, nonsectarian organization supporting children and adults with development disabilities and mental illness since 1950. With a staff of nearly 1,000 Trinity serves more than 15,000 people. After an employee read a newspaper story about McGoldrick's project, Trinity invited her in to discuss it.

"Trinity's role was vital in assuring the project's success," McGoldrick said.

In 2003 representatives of Trinity went to the state capitol in Springfield and obtained the support of Rep. Patricia Bellock (R-Westmont) and Sen. Dan Cronin (R-21st District Springfield) who introduced Senate Bill 809 to expand the housing options for people with mental illness who do not need continuous supervision and care in a group home. McGoldrick testified as a parent supporting the legislation.

"If we can demonstrate that people can be integrated and live next door to us with the proper supervision, this will change how mentally ill people are thought about," said Art Dykstra, president of Trinity.

"It was a no-brainer," McGoldrick quipped. "People with mental illness end up with much better, more permanent living conditions. They won't have to live in halfway houses and wander the streets."

In addition to allowing families to provide group homes for their relatives, the bill eliminates the high cost of placement in nursing homes, with substantial savings to the state.

The bill also provides a higher standard of care than is available in nursing homes and offers residents the opportunity to become more independent. In addition to the family member, it provides for up to three more people with mental illness to live in the home.

Offered a win-win proposition, both the Illinois Senate and House overwhelmingly agreed to fund the project, and Gov. Rod Blagojevich (D) signed the bill into law in 2004.

Trinity has opened two SNT group homes in Naperville, the largest municipality in DuPage County. One houses four men, the other four women. All residents are middle-aged adults coping with a variety of mental illnesses. The homes have individual bedrooms, a sitting room, a recreation area, and a full kitchen. McGoldrick managed to get several local merchants to contribute goods and services for the home. Some of the furnishings in the home were donated by furniture retailer Ethan Allen.

Trinity provides therapists and house staff during the day. A counselor helps residents with budgets and transportation. Otherwise residents run the homes themselves and alternate the cooking and cleaning duties. They get complete coverage for psychiatric care, including a psychosocial rehabilitation program, and a wide range of programs to support their social life. If they want to work they get help finding employment.

"These homes are awesome," said Sharon Holcomb, a residential director at Trinity. "All but one person are taking medications by themselves. Most work, and others are in the process of getting jobs. Overall, they have done excellently. Best of all they are getting a chance to regain their self-respect and learn responsibility that builds their confidence."

"I feel I can do better here," Steven said after a few weeks in the home. "It helps me to control my life. It helps me feel good about myself."

The majority of people with mental illness who live in residential settings end up holding down jobs, said Norm Bartels, transitional services center program manager for the DuPage County Health Department. But people in nursing homes often tend to stay trapped at the level of life skills they had at the onset of their illness rather than learning to adapt to it, according to Thane Dykstra, director of behavioral health services at Trinity. "People with mental illness can have full and productive lives if given the right opportunity, and nursing homes are not the right opportunity for most," he said.

The SNT group homes function like others in the state and operate under a line item in the state budget. As an experiment in care options, Trinity received a grant from the Department of Human Services to develop this innovative housing model with the priority of serving persons with mental illness who lived in nursing homes. Based on the funding provided, Trinity's goal was to open three to four homes under the present model. As the office of Mental Health began to move towards a fee-for-service model in July 2005, the grant funding for the project was reduced by 50 percent, curtailing plans for opening more homes.

The provision of residential and therapeutic supports within this model provides a cost savings to the state relative to nursing homes because state dollars are matched by federal funds. This is not the case for most care provided in nursing homes.

The new law is expected to help Illinois comply with the U.S. Supreme Court's 1999 decision in Olmstead v. L.C., which ruled that states are required to integrate people with mental illness into their communities, including providing them with a range of housing options.

Illinois, however, has not fully complied with this ruling.

In Illinois most group homes for people with disabilities are run by local health departments or social-service agencies with limited resources, leaving many families waiting years, if not forever, for an opening. Illinois ranks 30th among states in percapita funding for mental health services, according to the Mental Health association of Illinois. More than 44,000 people jockey for fewer than 4,000 apartments or group homes for people with mental illness.

"We are one of the worst states for mental health care in that we relied so heavily on nursing homes in our deinstitutionalization efforts," said Jan Holcomb, the association's chief executive officer." We have not met the needs of getting people into the community. We just moved the institution into the community."

One of the biggest obstacles to the acceptance of group homes remains a community's fear of residents with mental illness (see page 11).

The Naperville project is so successful it attracted the attention of HUD as a model that could be replicated in other states. Trinity hopes to publish a guide for those who wish to use this option for community-based housing.

McGoldrick said Trinity is like a dream come true for any parent with a special-needs child. "I can't tell you how fortunate I feel that Trinity became part of this project because they were the ones that made it successful."

McGoldrick no longer worries about what will happen to Steven when she is gone. She is so confident that Trinity will still be serving the community 50 years from now that she has decided to leave the house to Trinity in her will.▪