Fran Sadowski has seen firsthand the dangers of limited options.
During a study on services for "dually diagnosed" individuals with both developmental disabilities and mental illness, the CEO of Missoula Developmental Services Corporation shared the story of a 28-year-old client.
The client was living in a community based facility when he became seriously self-injurious. Because the state legislature had ordered the closure of the Montana Developmental Center in Boulder, there was no place for him to go. The state's only public residential facility – and the only Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF-IID), public or private, in Montana – the MDC was the only place where a dually diagnosed individual could be placed by court order in a crisis.
Left with no alternative to hospitalizing him in a facility never intended for individuals like him, Sadowski could do nothing as he suffered two major seizures and went into a paralytic state.
Serving at the time on the state’s advisory council to recommend steps for completing the MDC closure, Sadowski choked back tears as she told the group about the situation. She advocated for a state crisis facility where the courts could place someone in severe need.
At the same time, Sadowski recognized the need for more money going into community based services for individuals with developmental disabilities and/or mental illness. Through nearly a year and a half of meetings, Sadowski consistently maintained there was simply not enough money in the funding pot. Wages for direct care staff in private community group homes, driven by federal dollars, were too low to keep staff, she said.
And she recognized that the community based services and the MDC were all drawing from the same – too small – pot of money. But doing away with the MDC, which some had argued to the legislature would free up funds for community providers, was not the answer, either, she said.
Believing “let’s close MDC and everything’s going to be okay” is not true, she said, urging the council to take a broader view of “what does the system need in the community to be successful.”
For more than a year, experts from community services, state and local government, developmental services and parents of those needing the services met to search for answers.
They studied what other states do. They listened to presentations on how federal and state funding works. They examined facilities.
Over and over they debated the task assigned to them. Every other state that had closed an MDC-like facility had taken a much slower, more deliberate approach. No other state was entirely without an ICF-IID, and no other state had accomplished a closure without money as they had been tasked by the Montana legislature.
“These are real people that we’re serving and we sit here and we talk about dollars…It’s not about money. It shouldn’t be about money. It should be about what is best for the people we serve,” Sadowski said.
"I don't think you can do this in two years, and you certainly can't do it without more dollars," she said.
Sadowski was not the only community provider serving on the council to share the story of a client failing in community placement with nowhere else to go without the MDC.
Ken Brown from Opportunity Resources Inc., shared the tale of a client he called “George.”
The then-19-year-old George spent most of his life outside of Montana, receiving services for disabilities beyond the limits of Montana providers. When he turned 18, though, he aged out of the childhood services system and returned to live in Missoula at ORI.
One evening, after watching a movie, he asked a staff member whether she liked it. When she told him the movie about cancer depressed her (her husband had died of cancer), George’s “intermittent explosive disorder” got the best of him. He grabbed a butter knife and threatened to stab the woman. He also used a saucepan to beat on the building.
The incident led to a law enforcement call, and the ensuing scuffle included George biting an officer. That sent him to jail.
As a result, ORI was cited by OSHA for workplace violence. Neighbors called for assurances George would not be back. Clients at the group home expressed fear. And with no MDC option, George stayed in jail while providers tried to find a solution.
Before the MDC closure decision, George "almost certainly would have gone to MDC as the least restrictive setting possible," said a letter by six members of the MDC study council. "Instead, this child in an adult body sat crying day after day in a jail cell."
George needed more individualized care than ORI or other private services could offer, said Brown. That takes money, he said, urging the council to fix the funding system "so that we can keep our brothers and sisters in the community."
The story of another dually diagnosed individual came from his mother, a member of the study group.
Unable to speak and with profound hearing loss in addition to his dual diagnosis, Shawn relies heavily on those who care for him. So when Montana decided it needed to do something to help people like Shawn move out into community placement, he had no say.
Shawn lived for years in a "cottage" – a low population living arrangement similar to a group home – on the grounds of the MDC. The facility allowed him some freedom within a controlled community, said his mother. After failing twice on community placements, he was finally comfortable and at home, proud of his work and studies, she said.
But as the closure efforts began, familiar faces, both friends and familiar staff, disappeared. Shawn's cottage was boarded up. He was moved to different residences five times in a single year.
The changes around him were "beyond his capacity to cope," Shawn's mother told legislators.
"As the closure process escalated, so did his aggressive, self-injurious, and non-compliant behaviors," his mother said.
As a result, he increasingly refused to cooperate with some medical care, leading to deteriorating physical health, she said.
"Before the closure, Shawn was on the port list [ready for community placement] for several years…Now I've seen the work of many years of treatment undone," she told legislators.
The mother emphasized that her issues with her son's care are not with the MDC staff, "who work hard to help my son amidst an uncertain future. His current deterioration is the result of living in a facility slated for closure," she said.
Shawn landed in the IBC (Intensive Behavior Center), a locked 12-bed facility on the MDC campus for clients in crisis. That is where he remains today, and that is where his mother visits him, making twice-a-week trips from Bozeman to Boulder.
In trying to fix a problem for some, the state made things worse for her son and others, she said. Individuals with a dual diagnosis are no more cookie cutter than other people, she said.
"It's not one size fits all," she said. "Clients need different things."
The Thorniest Issue
According to a national survey on drug use and health, 21 in 100 Montana adults report symptoms of mental illness, with five in 100 reporting serious mental illness. That translates to 42,000 Montanans in need of mental health services. "George," Shawn, the 28-year-old client in Sadowski's story and others like them represent only about a tenth of a percent of those 42,000.
But their severe needs make them among the most costly to serve.
When the state cut funding last year, affecting services for Montanans with disabilities and mental illness, cries arose that it would hurt those least able to argue their cases.
“Those most vulnerable are those who will suffer the most from our inability to properly fund our responsibilities," seven Democratic legislators told the Legislative Finance Interim Committee in a March 13, 2018 letter.
"By failing to properly fund these services, we are clearly failing to protect public health & safety needs of the people we serve. It is truly an emergency, and to do nothing is not who we are as Montanans," said the letter.
The legislators urged a reversal of cuts to community case management funds that allow Montanans with disabilities and mental illness “to sustain their health, livelihoods and yes, their very lives.”
Restoring those cuts, however, would not address the challenges with "George," Shawn and the others with the most severe needs. Even before the cuts, everyone examining the problem seemed to agree there was just not enough money.
If there were more money...
That does not mean there are no answers out there, given enough money.
In a "Developmental Disability Crisis Plan" presentation to the MDC study council, Developmental Services Division Administrator Rebecca de Camara said, "The best way to deal with a crisis is to prevent it from happening."
A crisis system could deal with the immediate crisis and then get the client back into the community, but that would require money. A report prepared by the state Architecture and Engineering Division estimated the cost to construct one 4-bed unit matching services at the 12-bed IBC unit where Shawn now lives at $3.25 million. To be effective, those units would need to be placed around the state for geographic accessibility.
Other states have additional programs that Montana should consider, de Camara told the council, such as a crisis hotline and a mobile crisis outreach team. And all of them have at least one ICF-IID certified facility.
In addition, the state needs to increase coordination and cross training between the developmental disability system and mental health system, de Camara said.
"We can no longer continue to treat these folks in silos," she said. Otherwise, said de Camara, "we're going to have an influx of people from Warm Springs, at Deer Lodge."
All of that takes money.
As a companion cost, the state needs to come up with more money to pay better wages for direct care workers in community services, said Sadowski, Brown and other community service providers.
"For too long, Montana has had a developmental disability system that has denied providers what they need to be successful in helping people live in the community," wrote Charlie Briggs of Disability Rights Montana during the MDC study. "If an individual experiences crisis, such as mental health issues or autism or other disorders, they have often failed in their community placement – not because they cannot be served to live in the community, but because providers lack sufficient resources to provide those services."
Briggs went on to say, "Of course, it takes money to fix the system, but Montana needed to invest adequate funding long ago supporting quality community placements."
"There needs to be more dollars in the system," said Sadowski.
Another alternative is to send clients out of state for services, something that can cost as much as $500,000 a year per individual, said testimony to the MDC study council.
In the meantime, all of them – private providers, parents of MDC clients and of clients in community placements, legislators and state officials grappling with the issues – are vying for the same slim piece of the funding pie.
As Sadowski said, "It shouldn’t be about money. It should be about what is best for the people we serve."
But in the end, it is. And caught in the middle are “George,” Shawn, the client described by Sadowski, and others.