Motel room a 'last resort' for some with mental illness

Adam Richey has lived in a beat-up old camper with no running water or working toilet.

He has lived in a series of motel rooms, some with more roaches than others, some with more crime than others.

He has lived in a jail cell, in psychiatric treatment centers, in the hallway of a clutter-strewn boarding house.

Two weeks ago, the 43-year-old Sussex County man almost lost his life while staying in a motel room in Laurel. He was supposed to attend a holiday party, but wasn't doing well when his provider – Horizon House – came to pick him up. A nurse was called and he was rushed to Nanticoke Memorial Hospital. His mother, Sally Daisey, said her diabetic son's blood sugar level was reported as 821 – a critical, life-threatening spike.

Daisey has been through many such crises with her son. Her journal reveals the anguish and effort that goes into helping him live his life and escape the perils of paranoid schizophrenia, a diagnosis he has had for almost 25 years.

State officials intervened when they learned about Richey's most recent situation from The News Journal. Daisey said her son was to be discharged from the hospital back to the Laurel motel where he had been for about 10 days, but the state quickly moved him to a crisis house in Harrington, where he has round-the-clock supervision until a new type of setting is open in Millsboro.

That house will include five men, all with similar diagnoses, who will have 24/7 oversight and daily assistance with meals and other household basics.

Richey is one of 12,125 Delaware residents with a serious, persistent mental illness, a number reported by Washington-based psychologist Robert Bernstein, who is monitoring the state's efforts to reform its mental health system. The state is entering the fourth year of a five-year consent agreement with the U.S. Department of Justice that requires community-based services that enable people with such conditions to live in the most integrated setting appropriate for them – not relegated to life in a hospital.

His case raises ongoing questions about housing shortages and oversight for those in such fragile condition.

The state evaluates each person to determine the level of support needed, while also respecting that person's right to choose, said Dr. Gerard Gallucci, acting director of the state Division of Substance Abuse and Mental Health. Most are able to live in the community with minimal support, he said. They do not need extensive services.

Richey is among those who have received the most intensive services available in the state, according to Rosanne Faust, community mental health and addictions special project coordinator for DSAMH, who spoke to The News Journal with his permission.

He is part of an Assertive Care Team (ACT) through Horizon House, one of the state's contractors.

In an interview last month, Richey said he believes many others are out there without the kind of family or agency support he has. He is concerned about them.

"When you're coming out of an institution, lots of folks don't have parents who are there for them," he said. "My mom does for me, but she knows I have help. Horizon House puts her at ease. For others who don't have a place to go, they might end up in a motel for an indefinite stay.... And there are a lot of homeless mental patients out there."

Without care and oversight, Daisey says, her son lives a roller-coaster life that has followed a common pattern for years – starting out relatively well then falling back into drugs, getting locked up, going to the hospital to be stabilized, and winding up homeless.

"The best way to describe his life is – it's like a tornado," she said. "Would I like to bring him home to take care of him? Absolutely. Can I? No."

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Safe, affordable housing is a critical component of mental stability and overall wellness, experts say, but it is in short supply in Delaware.

"There's never enough housing," said Ted Glackman, Horizon House director in Delaware. "We're trying not to concentrate people in the same residences or apartment buildings. We're trying to do our best with all these expectations and fluctuating difficulties."

Add the kind of complications Richey has and even if such housing is secured, it can be difficult to retain.

Daisey said her son always received good care at the Delaware Psychiatric Center and a discharge plan – with a confirmed destination – was part of the protocol.

But out on the streets, he has sabotaged some of his best opportunities, she said. He falls in with bad actors, makes poor decisions, is vulnerable and easily manipulated, and winds up with no money, no food, or back on drugs.

He misses court hearings, winds up in jail for violation of probation, and whatever good things have been arranged unravel. All of that makes it tougher to find another place when he is well enough to return to the community.

"He has had a lot of things and he has refused a lot of things," Faust said. "You offer him something, and he just can't follow through. He had a period of some stability in Section 8 [subsidized] housing in Bridgeville. Beyond that, he's been tough."

Daisey's journal outlines years of struggle, trying to navigate the system as her son's advocate and work with a series of service providers, some far more helpful than others. His money, food, medications, housing, transportation, ability to meet obligations such as court hearings and doctor's appointments – there were many challenges, and Daisey found gaps in service and communication that she believes put her son in jeopardy. Things got much better when her son became a client of Horizon House, she says.

But she believes there must be a better way – for everyone.

"I'm on a mission to do something about housing for the mentally ill," Daisey said.

That's a mission Carlyle Hooff takes seriously as director of housing and community integration for DSAMH. On the front lines of that quest, she sees the challenge, but also successes that are less apparent to the public.

"I have discovered that there is a place for everybody," she said. "They just have to find it."

Tough to find

Housing is especially tough to find in Sussex County, Horizon's Glackman said. There are times when motel rooms are used as a last resort, he said – a way to keep someone off the streets until a better option can be secured.

"We're always looking for and trying to find resources we might not have known about," he said. "The staff has a pretty good handle on what is available, but sometimes we're finding something that works – and sometimes that is the least bad circumstance. We try to avoid shelters or hotel rooms if there's anything else, but we don't want anybody to be out in the cold. And we certainly don't have the right answer for all the people we serve."

Hooff said she knew of four or five people in such a setting, but said their service providers should be applying for other units – as Richey's was. There is no list of approved motels for such purposes, she said, and there are no approved vendors.

Daisey wonders if state officials realize how some people are living.

Richey spent seven weeks in motel rooms last fall, his mother said. The worst was in Greenwood. She complained about it and let it be known she would be talking to The News Journal. If she hadn't done that, she believes, he would still be there. Instead, he was moved to another room in Laurel – until that diabetic crisis.

The Laurel room was a big step up from Greenwood, he said.

"There were sharks in Greenwood," Richey said. "Someone would try the door at night, trying to break in."

He has been injured many times over the years, he said. He has been robbed. If he could, he said, he would live in a cinder-block house. He might feel safe there.

At Laurel, he had little to do but sit in the room, stepping outside for a cigarette occasionally or walking a mile to a grocery store to get a few things.

"The long-term picture – where can I be permanently? Where can I stay?" he asked. "Somewhere along the line I got lost and there is no place to go."

Daisey praised the state's efforts and said police and judges have been compassionate in their dealings with her son. She knows he has undermined many efforts on his behalf.

But she does not believe people with such fragile conditions should be moved around to places never meant as long-term housing – places with roaches, bed bugs, windows sealed with duct tape, doors with broken locks.

"I'm glad they're not shut down," she said. "There are people with nowhere else to go. They would be on the street."

But some land in a hotbed of trouble, with prostitution and drug deals routinely occurring on or near the premises, she said. She fears they are easy prey unless they are closely supervised.

Isolation is another problem. Faust says all but one person moving from long-term hospital settings and into the community have requested roommates.

"Folks who have been ill – especially for very long time – like to be around other people," she said. "Sometimes a single apartment is not their choice. We have vouchers available and people refusing to apply. They don't want to live by themselves. They want to live with at least one other person and maybe where there's a program supporting them."

Out on their own, they were lonely, she said.

"We need to allow these things to evolve and not think of it as static," she said. "That's not consistent with the client choice that we want to see."

Housing and services

Daisey wonders if the state's property at the Stockley Center is at least part of the answer for Sussex County. She agrees with those who say the site should be used to provide a safe place for people with a variety of disabilities who need residential space, support, and some level of supervision.

Many proposals have been made for that sprawling site, which long housed people with developmental and intellectual disabilities. But state and federal officials are loathe to move people from one institutional setting into another.

Community-based housing and services are the goal and for many people the strong preference. Those pieces are not in place everywhere, though, and even with recent gains the state remains short of capacity to meet the growing demand.

At a place like Stockley, Daisey said, people could keep an eye on each other and alert case workers if someone was heading for trouble.

When her son is well, he is a pleasure to be around, his mother said. He needs stability, she said. When things get stressful, though, it sets him off and at such times he can be frightening, furious, and put himself in real danger – yelling, screaming, threatening to jump out of a moving vehicle.

"I would not put up with anything like this from anyone else," Daisey said. "But he is my child. I do what I can for my son, but the most important things I cannot do. I have to rely on somebody else."

At times, she said, she has had calls in the middle of the night, alerting her that her son has been released from an evaluation center – with nowhere to go.

"There is always hope," she said. "I always tell him, 'Adam, you're still young. You can be happy.' I can never give up hope. I get advice from some people – you have to distance yourself. Tell me how to do that? You cannot give up on your child. Who does that? If you can't have him in your own house, you have to at least be behind the scenes fighting for your child. You have to be their advocate. What parent would not do that?"

'Warehousing'

The point of the U.S. Department of Justice suit against Delaware was to end the long-term practice of "warehousing" people with mental illness at DPC because the state had inadequate community supports. That is changing, but not as quickly or comprehensively as individual situations demand.

"As a parent, you want your child to be taken care of," Glackman said. "There are differences in viewpoints in people who have gone through recovery and their parents. Sometimes both are right. It's hard to tell what the best thing is and you take your best guess. We try to work in multidisciplinary teams and sometimes it takes discussion including the family and consumer to come up with the best scenario."

The uncertainty and fragile balancing act can take a toll on everyone. And many outside the situation do not understand the ongoing struggles, Daisey said.

"I want people to know that mentally ill people are not ill just because they do not take their medication," Daisey said. "They can still become sick while taking medication. Why else are patients in a psychiatric facility for months and months receiving treatment? They don't check into a facility and check out the next day. It can take a very long time."

But people with serious, persistent mental illness need not – and must not – be relegated to life in an institution, state and federal officials say.

Some, especially those with conditions like schizophrenia or bipolar disorder with psychotic features, may lack the insight into their need for support and ongoing treatment, Gallucci said. They may not accept the services offered to them.

Building a comprehensive system of support is not an overnight endeavor, but it is a critical component for this sometimes-fragile part of the population.

Hooff says there have been far more successful community placements than not as the state has sharply reduced its use of hospital beds.

"How many problems do we really have in the community? About 8 percent of the people," she said. "We're proud of what we have done. We have done a good job of giving people the opportunity to live in the community and get involved in their own recovery."

Those who are having recurring problems should let state officials know, she said.

Contact Beth Miller at (302) 324-2784 or bmiller@delawareonline.com. Follow on Twitter @BMiller57 or on Facebook.

Housing Numbers

This is snapshot housing information, reflecting totals on Dec. 17, 2014, for those with severe, persistent mental illness under the care of the state's Division of Substance Abuse and Mental Health (DSAMH):

State Totals

Supervised apartment beds 157

Transitional housing 13

Supported rent assistance 347

Voucher holders seeking housing 59

Group home beds 138

Total: 714

Kent County

Supervised apartment beds 16

Transitional beds 4

Supported rent assistance 47

Voucher holders seeking housing 8

Group home beds 30

New Castle County

Supervised apartments 133

Transitional beds 8

Supported rent assistance 276

Voucher holders seeking housing 39

Group home beds 67

Sussex County

Supervised apartments 8

Transitional beds 1

Supported rent assistance 24

Voucher holders seeking housing 17

Group home beds 41

Source: Delaware Department of Health and Social Services