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Rallying for better housing: as personal care homes close in Philadelphia, advocates scramble to find housing for people with mental illness.

When Cambridge Retirement Community, a personal care home in South Philadelphia, announced that it would close its doors on February 24, 2008, the Mental Health Association of Southeastern Pennsylvania (MHASP) went into action: Its We C.A.R.E. advocacy project began working to find homes for every one of the Cambridge residents, the majority of whom have mental and/or physical disabilities.

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We C.A.R.E. (Communicate, Assist, Respond and Engage) has been in this situation before: Over the past three years, Lisa Faulkner, who heads up the program, and her team have visited more than 50 personal care homes, have met more than 1,000 residents, and have helped relocate nearly 400 of these people during several closures. "What I have observed," Faulkner said, "is that people with mental illnesses and other disabilities, as well as elderly people, are not getting the supports that they need and are entitled to. We need supportive housing for these individuals."

Supportive housing, which promotes recovery from mental illness, is safe, decent, affordable housing with flexible supports--and no strings. Residents may hold a lease in their own name. They are not required to move as their needs evolve; instead, the program adjusts its services.

One such program, Housing First (www.pathwaystohousing.org), piloted in New York City, offers apartments to homeless people who have mental illnesses and who may have substance abuse problems, without requiring anyone to first become clean and sober. Replicated in some 150 cities around the country, the program has proved to be an effective and cost-conscious way to help people stabilize their lives. The program costs about $23,000 a year per person, compared to more than $40,000 a year for the use of emergency room treatment, detox, and the criminal justice systems--the kinds of public systems that homeless people often are involved in, and whom supportive housing could help.

"The shortage of supportive housing has resulted in large numbers of homeless individuals, including those with mental illnesses, living on the streets," said Joseph Rogers, MHASP's chief of advocacy.

In an effort to convince the Commonwealth of Pennsylvania to fund an adequate number of supportive housing units, 34 advocates gathered with picket signs and flyers on the northwest corner of Broad and Snyder Streets in Philadelphia, a half block from Cambridge Retirement Community, on January 15, 2008, the 79th anniversary of the birth of Dr. Martin Luther King, Jr. MHASP sponsored the rally along with Project H.O.M.E., a housing advocacy and services organization, and the People's Emergency Center, which serves homeless families. The location was chosen to highlight the Commonwealth's reliance on facilities such as Cambridge (which recently had announced that it was insolvent) to house individuals with mental illnesses, despite the fact that such facilities were not developed to meet the complex requirements of people with mental illnesses and are ill-equipped to do so.

"As a private operator, a personal care home has a right to close, and it is not our target," Rogers told the crowd at the rally. "But if it does close," he added, "126 additional Philadelphians will need decent places to live, in an area with a dire shortage of appropriate housing."

The operative phrase is "appropriate housing"; personal care homes are not appropriate housing for many people with mental illnesses. One problem with such residences is that when they close, residents struggling to build stable lives may be shuffled from one temporary living arrangement to another, often without any attention paid to their wishes and needs.

"Some personal care home residents in Southeastern Pennsylvania are being offered housing hundreds of miles from their communities," Faulkner said. "People are being shifted around like cattle. In fact, I have seen more publicity about the mistreatment of animals than I have seen about cruelty to people with mental illnesses and other disabilities living in [these] homes."

Although many personal care home staff do care about the residents, some homes disregard residents' dignity and safety. "When I participated in the relocation of residents from a personal care home in Lancaster, Pennsylvania, we found two years' worth of personal mail that had not been given to the residents," Faulkner said. "There were people who had lived there for over a year who had never seen a medical doctor. There were people there who had owned homes but lost their homes because there was no one there to help them take care of their personal business, which a personal care home is supposed to do."

Faulkner continued, "There was one couple who shared a room. The husband was not able to get out of bed, and he couldn't wash himself or exercise. The personal care home depended on the wife to take care of him, but she had a mental illness and needed personal care herself. The staff just left them in the room to take care of themselves, yet the personal care home was being paid to take care of them. In this particular home, towards the end of the relocation process, the only food was cereal."

However, by many accounts, Cambridge staff have been concerned about the residents, and some of the residents didn't want to leave. "This is a home for us," said Elizabeth McBride Young, age 51, who has lived at Cambridge for the past two years. "We're like a family."

Like many of the other residents, Young was fearful about moving. On February 18, she told a reporter on the local ABC-TV affiliate's 6 o'clock news that she had seen other places to live but "some of the people are so heavily sedated that it's frightening to walk in. It's like walking into Byberry," she said, referring to Philadelphia's former state hospital, notorious for abuse and neglect of patients. Young, who said she "had a pretty productive life; then I had a breakdown" and now hears voices, added, "We all paid taxes; we held jobs; we need help now."

Her husband, whom Cambridge evicted because he had ignored several warnings to stop smoking in their room, now lives in a Veterans Administration facility, which won't accept veterans' spouses unless they also had been in the service, Young said. She sees a psychiatrist for medication, but has not been able to obtain the services of a therapist. "[Cambridge] has not hooked me up," she said.

Other problems with personal care homes include the fact that residents who receive SSI (Supplemental Security Income) must give their entire check to the owner of the residence. In return, most residents receive a $60 allowance (the minimum that regulations require) to cover medication co-pays, transportation, entertainment, and everything else. "That doesn't even pay for a monthly SEPTA [Southeastern Pennsylvania Transportation Authority] pass," Faulkner said.

To make matters worse, the average SSI/SSDI (Social Security Disability Insurance) recipient, who receives approximately $600 per month, cannot afford a one-bedroom apartment in Southeastern Pennsylvania.

Advocates want to make it possible for people with mental illnesses to live meaningful lives in the community. "We call upon the Commonwealth to create, fund, and implement an effective plan to provide safe, permanent, supportive housing," said Rogers. "A large investment of political and financial capital will be needed, but human dignity and safety are priceless."

The Commonwealth says it is stepping up to the plate. According to Pennsylvania's top mental health official, Joan Erney, "The Department of Public Welfare and the Office of Mental Health and Substance Abuse Services [OMHSAS] have been moving forward aggressive initiatives both in personal care home reform and development of supportive housing initiatives. Regulatory revision and licensing activities are enforcing increased safety and decency in living conditions in personal care homes. OMHSAS, along with the counties, advocates, and local agencies, has been coordinating efforts to relocate individuals who need alternative housing when a personal care home closes." Erney said that new policies will be forthcoming to guide the use of personal care homes for people with behavioral health issues.

Erney added, "OMHSAS has issued a policy requiring counties to develop housing plans to increase supportive housing options.... Philadelphia has committed $5 million towards this effort and has hired additional staff to move forward supportive housing activities in the city. This commitment includes a partnership with the Pennsylvania Housing Finance Agency in establishing subsidies to make rental units affordable to people on SSI."

According to a spokesperson in the Philadelphia Department of Behavioral Health and Mental Retardation Services, the $5 million investment is expected to translate into 63 units of permanent, supportive, affordable housing. But homelessness expert Dennis Culhane of the University of Pennsylvania has said that Philadelphia needs an additional 2,000 units of permanent supportive housing, according to a recent story in The Philadelphia Inquirer.

While advocates are working as fast as they can to find places for everyone displaced by Cambridge's closing, as of this writing 17 residents remain at the personal care home. Six of these individuals have places to go and will be moving soon; two walked out of the home two days ago and their whereabouts are unknown. "The other nine have yet to be placed," Faulkner said.

Meanwhile, another personal care home has announced that it is closing by May 28, and 15 more people are being relocated. "The dominoes are falling fast," said Rogers. "Cambridge residents are now competing for the few local beds with these other residents. You do not have the right to play musical chairs with the lives of human beings."

Fran Hazam, an MHASP advocate who has helped in the Cambridge relocation effort, said that the city's and state's elected officials "need to look into the eyes of these persons who have lived in South Philadelphia from birth and tell them that they need to move to Reading or Allentown because there is no room for them in Philadelphia. We have had to do it."

Editor's note: Behavioral Healthcare attempted to contact organizations representing personal care homes in Pennsylvania to find out their perspective, but none responded by press time.

Susan Rogers (srogers@mhasp.org) is Director of Special Projects for the Mental Health Association of Southeastern Pennsylvania.

RELATED ARTICLE: 'Loony bin rally'

When a Philadelphia Daily News reporter received a press release about our January 15 event titled "loony bin rally," he did a double take and called me. (Given the degree of prejudice associated with mental illnesses, I was not entirely surprised by his call.) The reporter then called PR Newswire, the wire service my agency had been using for decades to disseminate its releases. The news service quickly discovered that the stigmatizing "slug" (a short phrase indicating the content of a release) was the work of a feckless employee, who had expected her "joke" to be caught before the release hit the wire. It wasn't.

The company fired the employee and began to make amends. Referring to the slug, the apology read in part, "PR Newswire understands that such terminology feeds the prejudice and discrimination associated with mental illnesses and will take steps to ensure that nothing like this occurs in the future." PR Newswire also reran the press release and did not charge us for the original release. Company representatives

said they would consider our recommendation that they develop policies spelling out acceptable language and possibly institute staff sensitivity training.

The incident was covered in the Philadelphia Daily News as well as online on the Philadelphia Inquirer's Web site, the media gossip site Gawker, and hundreds of other Web sites. In fact, the foul-up received a lot more publicity than the rally did.

--Susan Rogers
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Title Annotation:ADVOCACY
Author:Rogers, Susan
Publication:Behavioral Healthcare
Geographic Code:1U2NY
Date:Apr 1, 2008
Words:1927
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