Having to leave home, family and friends is hard. But when things go wrong for North Dakotans with developmental disabilities it’s a reality.

Some must pack up their lives and move away — many for years at a time — to the northeast corner of the state, when local caregivers lack the space or resources for the care they need.

Progress has been made but some are now questioning whether the state could do more to help these people stay home. And even whether it is meeting its legal obligations to do so.

"I guess I feel like we need to shake the system up a little bit," said Teresa Larsen, head of a local advocacy group for the developmentally disabled. "Things have been stagnant … We can’t just say the way we’re doing things is working and it’s fine."

North Dakota's care for those with developmental disabilities is "In Transition." The Bismarck Tribune launches a five-part series today to weigh the pros and cons of institutionalized care and the push for change at the long-established Life Skills and Transition Center.

Views on the institution in Grafton differ. Advocates say it offers a "safety net," along with consolidation of expertise and care. Others, while pleased with the level of care provided there, are pushing for shorter stays and a wider spread of resources across the state to allow patients to receive care near their hometowns.

Since the '80s, the state has adopted many in-community care practices, including integrating those housed at the institution into the town of Grafton through local jobs and volunteering.

"Almost always the things that were happening, starting the institution ... decreasing the size of the institution, renaming it, almost always we’re following what is the best practices, if you will, or the kind of model of what’s going on in the country," said Brent Askvig, director of the North Dakota Center for Persons with Disabilities at Minot State University.

But could the state go further?

It has been a long transition — one which the next, cash-strapped Legislature will continue to wrestle with as it determines levels of funding for the center in Grafton versus money for local providers. And these decisions will be made before a backdrop of institutions closing or being repurposed in other states.

Eugene Panzer sits crossed legged on the living room floor playing a Duke Nukem video game. The volume is turned up as the explosions and gunfire compete with the techno-music from the early-'90s game. To the side is a cup of Ramen noodles.

Panzer, 25, lives like many young bachelors — dirty dishes in the sink, garbage that needs emptying and dirty clothes piled on the floor in front of the washing machine. A small kitchen table with three chairs, a worn sofa and loveseat, a television with a video game system and leisure chair fill his living room and kitchen area.

There are small attempts to make the apartment look homey — a couple of floral pictures and a kitchen clock hang on the wall. On top of the refrigerator next to the loaves of bread is a framed collage of pictures of his nieces and nephews.

The walls in his bedroom are bare, with a few knickknacks and pictures placed on top of his dresser. A couple of the drawers are open and unfolded clothes haphazardly hang over the edges.

But Panzer is not a typical bachelor.

Asperger syndrome, obsessive compulsive disorder, reactive detachment, fetal alcohol effect, mild retardation and diabetes are his diagnosed conditions. Together, they require 24-hour care by a professional from a community-based service provider for individuals with disabilities.

To get to where he is today — living in his own apartment — the Glenburn native has endured a number of misdiagnoses by doctors and specialists, attended numerous schools and the number of hospitals and residential treatment facilities he's been admitted to is as long as the list of psychotropic drugs he swallows several times a day.

Shuffled Around

Unable to obtain the appropriate educational services at Glenburn Elementary School, Panzer spent time at two elementary schools in Minot. From there, he had two unproductive stints at the Dakota Boys Ranch in Minot and was admitted to the State Hospital in Jamestown. He found success at Bar None, a residential treatment facility near Minneapolis, but a funding issue forced the family to pull him from those services.

His last institutional placement for care was at the Life Skills and Transition Center in Grafton for three years until he was 17 years old. The facility is a North Dakota state-run agency located in the small community about 40 miles northwest of Grand Forks and is a residential treatment facility for people with severe intellectual and developmental disabilities.

Life in Grafton

To Panzer, anything is better than living at the Life Skills and Transition Center.

"Pardon my French, but I wanted to get the hell out of Grafton," Panzer said earlier this year. "When you get mad or something, they'd much rather dope you up than talk to you."

At first impression, Panzer said he liked the facility.

"About a month or two, it just started to go downhill," he said.

Panzer said he eventually got used to the way staff handled his outbursts.

"I just felt like they would do it (giving him added medications) just to get me out of the way. I learned to accept it after a while. There was nothing I could really do about it. That's why my mother fought so hard to get me out of that place," he said.

"They did their job," Sheryl Panzer said. "They did what they had to do, but my impression is they were trying to mold something out of Eugene that wasn't there. You cannot take somebody and give a bunch of medication hoping you can mold them into a human being."

The Panzers would see Eugene every month during his stay in Grafton by traveling halfway, usually in Rugby, for a visit or to take him home for holidays or weekends.

"When we would go and visit him, he was like a zombie a lot of the times," Sheryl Panzer said. "People like Eugene, they've got to have personality. They've got to have soul. They've got to have feelings. He was constantly having nervous ticks, because he was on so much medicine."

Blocking Cheryl and Chuck Panzer's efforts to have their son released from the institution in Grafton was the realization the community-based service providers in the state were unwilling to place their son in local care due to his history of violence.

After hearing about Panzer, Community Options in Bismarck stepped up and said it would help him. The community-based service provider has locations in 10 towns and cities across North Dakota.

"They gave him a fresh start," Sheryl Panzer said. "I trust these people .... He's getting to be himself. He's Eugene again. Laughing and joking and wanting to do things."

North Dakota's advocacy organization for those with developmental disabilities is pointing to what it believes are serious compliance issues with disability care standards.

Teresa Larsen, executive director of the North Dakota Protection and Advocacy Project, is questioning whether the state is meeting precedents set by a 1999 U.S. Supreme Court ruling, Olmstead v. L.C., in which states must not unnecessarily segregate people with disabilities in institutions and ensure they're integrated into the community as much as possible.

While the population of North Dakota's institution has greatly decreased, advocates worry that progress has stagnated and question the reasons so many yet reside at the Life Skills and Transition Center in Grafton.

"There's some people that have been there for years," Larsen said.

P and A expressed these concerns to the North Dakota Department of Human Services in September, asking that the agency begin a conversation to address the issues.

"If not, we'll need to look at other options," Larsen told the department, even a potential lawsuit, should discussions halt. "I feel like we have their ear."

Larsen is pushing the state to be more aggressive in keeping people with disabilities out of the institution and moving those living there back into the community. She said she isn’t going as far as to say the institution should be closed by a set date. Instead she is advocating for better planning when someone has to go into the institution to move them out more quickly — ideally within 30 to 60 days, treating LSTC more as a crisis center than an institution.

"We still do need a short term 'safety net' on occasion," she said. "We need to define and agree on what a 'safety net' is .… To me, right now, it's all so vague and cloudy," she said.

Larsen points to a P and A client who is in LSTC now, for 30 to 45 days, while staff is hired care for them in an apartment, "and it really is a safety net situation because, in the meantime, she has nowhere to go. To me, that’s the appropriate way to use the institution."

If a transition takes longer, she said, planning meetings should be held on a monthly basis to keep the goal of moving a person back into the community at the forefront.

When transitioning LSTC residents back to community settings, a patient's team of caregivers and advocates assigns a numerical score indicating readiness to leave the institution.

"When they have this score, it was understood then that the team would be moving toward transition out of the institution, but, unfortunately over time, people have sat on that list for years," she said.

While the average length of stay is three years, some have been there more than 10 years, including one from 1973.

"We're starting to find more and more people who have been on the list and on the list and on the list and are getting passed up and passed up and passed up and are living there," Larsen said. "We can't have folks going there and just staying there"

As of the most recent report provided to P and A, there were about 28 out of 74 total LSTC residents on that list.

Larsen said the solution is about convincing community providers, that with the right supports, more people with disabilities can live in the community. She doesn't think the state is pushing providers enough and she doesn't think the state is doing enough to make sure community providers have the support they need.

"It's both the role of the department and community providers to take a harder look at transitioning," she said. "It can't be a matter of the provider saying we'd like to take them but we don't have enough resources. Well, the department needs to give them more resources then."

So far, Human Services Director Maggie Anderson has been good about listening and addressing P and A's concerns, according to Larsen. The state's answer has been to hire a full-time diversion and transition coordinator to oversee the transition process.

That's worth a shot, Larsen said. But regional human service centers also must step up and take responsibility as brokers of services that meet needs and quality-of-life standards.

Since an ARC lawsuit in 1980 marked a turning point in North Dakota and how it cares for people with developmental disabilities, the number of community providers, such as HIT Inc. and Community Options, has risen to more than 32 - raising the question of whether there still is a need for a centralized institution.

"When you go to Grafton, you look at a group of people who have been forced to sacrifice friends and family and living at home - all kinds of things in order to receive the treatment provided," said Mike Williams, a Fargo-based attorney who was involved in the ARC lawsuit.

"We should be able to put those services wherever the people are instead of forcing the people to go to Grafton and sacrificing their lives basically in order to get that treatment," he said.

After the ARC lawsuit, residents at the state institution in Grafton moved out in record numbers and lawmakers continued to push for community inclusion. Key to those services is a Developmental Disabilities Bill of Rights in North Dakota Century Code.

"It says it's a matter of state law that every person with a developmental disability is entitled to treatment in the least restrictive, appropriate setting," Williams said.

Least restrictive also means it should be as close to home as possible, he said.

In 2005, legislation was passed to transfer more residents to communities and required the director of the Department of Human Services to convene a task force to achieve this. The task force created population goals for the institution as part of a plan to reduce the number of residents, which is now down to 56 adults and 18 "youth," over time, rather than overnight. Part of the process included more funding for community providers to increase their capacity, as well as creating more community living arrangements.

And there may be some cost savings involved in moving care to local communities. The cost of a provider with services similar to what's offered at the state institution is $524 a day for adults and $705 a day for children as compared to $912 a day at the institution, according to the state Department of Human Services.

Specialized care?

Other state governments are wrestling with the same question on the need for institutions.

Some say there needs to be a "continuum of services," said Brent Askvig, director of the North Dakota Center for Persons with Disabilities at Minot State University, meaning there need to be options for services and supports for people that range from really intense to less intense.

State officials and employees at Life Skills and Transition Center argue the institution serves as a "safety net" for community care providers when they can't handle intense cases.

"People who receive services here receive them because for some reason or another, at that point of time in their lives the community service provider is not able to meet their needs," said LSTC Superintendent Sue Foerster.

At LSTC, there are dozens of adults and children, some with challenging behaviors or sexual offender tendencies, who are said to be in need of the extra attention. Foerster and her staff also said the center is an asset due its knowledge base from years treating intense cases and the multitude of expertise available in one place, including extensive medical services, physical and occupational therapy services, as well as vocational day program services, in which people work both on-campus and off-campus

"I don't know that I'm convinced," Askvig said. "I don't know that in every single case I'd know exactly what to do if the person wasn't in an institution, but there are lots of bright people around the country and the world, in places where they have no institutions, and they still serve people with the same kinds of support needs as the people we have in North Dakota."

He instead advocates for community-based options, which are increasingly becoming viable options.

"The quality of services there (LSTC) could be 100 percent of what anybody could expect, but they are still an institution in a part of the state on a campus .... And people know that's where people go because they have a disability," said Teresa Larsen, executive director of the North Dakota Protection and Advocacy Project, an organization that promotes the rights of people with disabilities.

Larsen also advocates for moving state resources away from institutionalization and toward community providers. She pointed out misunderstandings about who goes to the institution, often perceived to have greater needs only treatable at the center. But that's not the case, according to Larsen.

"I still maintain that those people could be served in the community, if we moved the resources," she said, adding there are facilities with the same level of service and 24/7 supervision in, at least, all of the big communities in North Dakota,

Economic dependence

Today, the institution resembles a small college campus that the town of Grafton has grown around. It has several fallow buildings, some that were scheduled to be demolished prior to state-mandated budget cuts this year.

The state has made a huge investment in placing qualified staff there, Williams said. Currently, the center has 374 employees and much of the center's expenses go toward their salaries.

Williams said he believes the state can put qualified staff where the people with developmental disabilities need treatment, as opposed to relocating them to Grafton.

"The real question is why does that need to happen at Grafton? Why couldn't those services be provided in Fargo or Bismarck or Minot or Grand Forks?" said Williams, looking at national trends in which many states have closed their institutions.

According to information provided by the Department of Human Services, the average length of stay at the Life Skills and Transition Center is about three years.

While state legislators appropriate millions of dollars to transition residents from the center, their spots continue to be filled with new patients. Staff at the institution say they can't control the number of people with developmental disabilities being brought in by providers.

"The only way you can be served by our residential services is if every other residential service in the state of North Dakota has said that they can't serve the person," said Paul Kolstoe, LSTC director of clinical services and psychology. "They're not sent (here). This is the only place that they have to choose from to live, and as soon as they have any other place to live, they can go."

Concerns do remain over shutting down the center entirely because it is viewed by many as a safety net. On the other hand, proponents of deinstitutionalization wonder how much has changed if people are still being centrally housed for extended periods of time.

Since 2013, Eugene Panzer has been living in his own apartment in Bismarck with support staff while his parents remain in Glenburn, a small community north of Minot.

"I'm 24 hours with staff for now until I can get myself adjusted," Panzer said. "You know, get myself straightened out. Then I won't need staff as much."

"I feel a bit of freedom," Panzer said about living in an apartment with staff always with him. "I'm not restricted to a room. I feel happy, and I am progressing so I can get less and less staff hopefully."

Overall, Panzer thinks his stay at the Life Skills and Transition Center in Grafton helped him.

"I needed help," Panzer said. "I actually needed help for my behaviors and outbursts. I had a past history of violence to my family. I would hit my mother. Of course, I don't do that any more."

But the numerous confrontations with residents egging him on to fight and a constant distrust of staff left him not liking the person he was becoming.

"People (residents) would pick on me, pick fights with me. I didn't like it there. Yeah, you got to do stuff, but you were confined to a suite," recalled Panzer, who shared the space, which consisted of four bedrooms and a shared common area, with three other residents.

"I was trying to be like everyone else and be mean and just a real butthead. I wanted to be better than everyone there," Panzer said. "My first impression of the place was, yeah, we're going to have fun and it's going to be an OK place. After about a month or two, it just started going downhill."

If Panzer refused to participate in activities or other requests from the staff at the Life Skills and Transition Center, he would be given restrictions. It was often a trigger for violence.

"The right way they could have done it is just sit down and try to talk to (me) and talk it out instead of take the easy way out," said Panzer, of the doses of medication.

Panzer said playing video games also helps his anger go away.

He responds to positive reinforcements from the staff at Community Options.

"It's nice to talk to someone. If I'm having issues, the staff will do their best to sit down and listen," he said.

Panzer has goals he wants to achieve one day - some more complicated than others.

"I want to manage my own meds," Panzer said of one goal. "I'm guessing, when it gets better and I'm more consistent with stuff, I'll be able to take public transportation if I'm ever alone. I want to get a driver's license and save money for a laptop computer."

He has filled out a job application to work on the cleaning staff for a local hotel.

"I have the opportunity; I just have to take the initiative," he said. "(I'm) just trying to prove to the world I can do it."

Health care providers that offer services to people with developmental disabilities in communities across the state often view the Life Skills and Transition Center in Grafton as a safety net for those they cannot serve.

To some, the net fulfills its purpose as a continuum of services, or the notion that there should be options for services and supports for those with developmental disabilities, ranging from less intense to more so.

"Sometimes people need to be at Grafton," said Mike Remboldt, CEO of HIT Inc., a community provider that serves the Bismarck-Mandan area. "The way the laws are written, these people have to have services."

HIT Inc. contracts with the Department of Humans Services' Developmental Disabilities Division, Remboldt said. The state screens people with developmental disabilities to determine if they're eligible to go to HIT Inc. or other providers. If they're eligible, families and caregivers will tour all the providers, and a team of people at HIT Inc. also determines if they would be able to serve the individual, he said.

To Remboldt, the Life Skills and Transition Center is a short-term placement for people with developmental disabilities. It's a place where they go to get help during crisis situations, are rehabbed in some sense then return to their communities.

Once they're transitioned to the community, which, on average, takes about three years, HIT Inc. and other providers offer group homes and apartments for people with disabilities.

"It truly is a transition and a safety net now. It's not a place you're going to live the rest of your life," Remboldt said.

Remboldt said does he believes people with developmental disabilities with complex needs can be effectively served in community-based settings in a cost-efficient manner. HIT Inc. is capable of serving people with higher needs that have been at Grafton. In fact, the provider has taken more than 20 people out of Grafton over the years.

"Almost everybody at Grafton could be served in the community, as long as you have the right community supports," Remboldt said.

Still, there are certain medical disqualifiers for people wanting to come to HIT Inc., and they may be better served at the Life Skills and Transition Center or an intermediate care facility for people with developmental disabilities, a distinction that is an optional Medicaid benefit that providers 24-hour care in a closed residential setting.

For example, if someone was on a ventilator, HIT Inc. would not be able to serve them as it does not have medical staff.

"We've had a lot of people that have had to go back to Grafton for a few months," Remboldt said.

And some prefer to be at Grafton and have preferred its services over those from community providers, he said.

"We've actually had people who were out with us in the community and said, 'I want to go back to Grafton. I like it better there,'" Remboldt said. "And there are some parents who want their (sons or daughters) in Grafton."

In Grafton, some residents hold various jobs in the community. Children there attend the public school. They have dorm rooms and can participate in whatever activities they'd like.

"Grafton serves a unique niche," Remboldt said.

Remboldt indicated one person came to HIT Inc. from Grafton but wanted to back go back. the individual did not like having a staff member always following him through the HIT Inc. program.

"We've wanted to bring somebody here and the families fought us because they've been at Grafton for 30 years. One, they're worried that, if they move them out and it's not successful, can they get them back in Grafton," he said. "The other part is, after 30 years, it's their home."

Though all people with developmental disabilities are afforded the opportunity to stay in communities, Remboldt said "not everyone can be in the community."

"There are people that - as citizens - we don't want to be here either," he said, noting they may have been abused over the years and have a sexual predator history.

"You and I - as a citizen - would said, 'Yeah, everybody has a right to be in the community, but not next door to me," Remboldt said.

And some organizations might not want the liability when it comes to providing services to someone with a sexual predator history who wants to live in a community.

The Life Skills and Transition Center also offers a treatment program and supports for people with developmental disabilities and sexual-offending behaviors.

"I'm a supporter of Grafton and the way the state handles it is that it's a safety net," Remboldt said.

As part of the state's push to transition more people from the institution and into communities, HIT Inc. has worked with the institution to move some of its residents into group homes and other residential programs.

"We've taken, in excess, 20 people in the last four or five years out of Grafton to help them downsize," Remboldt said.

HIT Inc. also recently got approval from the state to build a new children's group home in Mandan, Remboldt said. The home will take five to six children out of the institution, where there are 19 youth, and is set to open in the spring.

Staff at the Life Skills and Transition Center are very supportive about getting people into the community, Remboldt said. The center has a CARES team of professionals who work with HIT Inc. and other providers to help people in the community stay in the community.

"If we have an individual that's got some major issues, they'll send staff down, their psychologist down and help us try to figure this out so that they can stay in the community," Remboldt said.

Paul Kolstoe, director of clinical services and psychology at the institution, said there are six staff members spread across North Dakota, who serve about 300 people, conducting behavioral analysis and helping providers, many who might be short-staffed or struggle recruiting qualified professionals.

"One of our issues with serving people in the community is the lack of community resources. It's hard to get a psychologist or psychiatrist here in town to work with our population," Remboldt said.

Psychologists and psychiatrists are at a premium in the state, and these professionals often have big caseloads, making it difficult to make it to visit community providers such as HIT Inc., according to Remboldt.

HIT Inc. will sometimes use West Central Human Service Center in Bismarck, but it has big caseloads, too, he said.

Remboldt and his staff have found some success in forming a group of mental health professionals - psychiatrists, psychologists, counselors - to help them.

"We're most successful if we can get one person that would talk to all the people at the site," he said.

At HIT Inc., they have a psychiatrist who works with five residents and understands their living conditions, who the roommates are, their environments and what could be causing them problems.

The Braun family has seen both sides of the care system for people with developmental disabilities.

Barbara Braun had two developmentally disabled sons - Jeremy and Jimmy - born a decade apart with different needs. Jimmy has spent most of his life near his family in Mandan. Jeremy has lived in Grafton at the Life Skills and Transition Center.

And the Brauns' two experiences convinced them there will always be a need for the LSTC.

"I know there's a big push to deinstitutionalize everybody and I think as many people that they can put into the community that can function and be taken care of in the community with services, that's great, but there will always be a faction of people that are medically fragile, like Jeremy was, that need those services in that place," Barbara Braun said.

Diagnosed with microcephaly and cerebral palsy, Jeremy moved to Grafton when he was about 6 months old after suffering massive brain damage from continuous seizures. He died there in 2011 at age 33.

Barbara Braun said it was difficult leaving her youngest son in Grafton, but with six children to take care of, it was the best choice.

"You feel good about the fact that they're trying to take care of this individual whose seizures were never under control," she said. "As his health got worse, then you know you made the right decision."

Because of the developmental delay, Jeremy never grew much past 4 feet and was bound to a wheelchair. The seizures eventually stopped. Through physical therapy and an eventual surgery to connect him to a baclofen pump that would stop his muscles from tensing, he was able to gain some movement back from the cerebral palsy. And because he was not with the other kids, he was not getting sick all the time.

"Bathing became easier. Dressing became easier. He even gained weight," Barbara Braun said. "That (LSTC) was absolutely the right place. He would not have lived that long had he been in the community."

LSTC would bring Jeremy home for a visit once a year until the trip became too much for him. The Brauns visited him every six months to a year in the three-story Health Services building, where he lived. His room was decorated nicely - first with sports items, then with lighthouses.

"I still have them in a box somewhere," Barbara Braun said of lighthouses.

She never knew if Jeremy knew who she was because he could not speak and was legally blind, according to Barbara Braun.

"Was I clear to his sight? Was I blurry? Was I fuzzy?" she asked. "He never said mom; he never had words ... He laughed and you knew it was a laugh."

It was also decided that LSTC residents needed to go to public school in town and Barbara Braun wondered why: "He's not educable; he's not even trainable."

For Jeremy, education was simple. Goals were to sit upright in his wheelchair instead of lying down all the time.

"We said let him do whatever he can do," Barbara Braun said. "They made things happen that would blow your mind."

Jeremy went out in the community with staff and had a scrapbook full of things that they did.

"With their help, he collected those can tops and donated the bags full of those tops to the Ronald McDonald House in Fargo," Barbara Braun said.

When efforts increased to get people into the community and deinstitutionalize, the Brauns were reluctant because Jeremy was doing so well.

"We were nervous," Barbara Braun said. "There was a time when it was very nerve wracking ... We don't think, we know, he won't do well in the community. Some could do well, Jeremy just wasn't one of them, that's why he was there the whole time ... He was thriving, he was loved, he was cared for, his needs were met, he had medical help right now, and I guess, what more could you hope for."

For years at the end of his life, Jeremy could not eat and was fed through a stomach tube. Sometimes, he would gag and the fluid in his stomach would come up and aspirate into his lungs, causing infection.

"After many years of that, you get scarring in your lungs and after a while your lungs just don't work anymore and you're just done," Barbara Braun said.

She had just had hip surgery and didn't get the chance to say goodbye before Jeremy died. Her second oldest, Michael, was in the military and living in Fargo, so he went up and stayed with Jeremy until he died.

"He didn't die because he was in Grafton," Barbara Braun said. "He lived as long as he did because he was there."

Jimmy

Jimmy, the third oldest, is 48, living in a HIT Inc. group home in Mandan. He has a job as the community provider's mailman. He's having some health problems, but generally, is doing well.

Jimmy was diagnosed with ADHD and motor expressive aphasia, "which means he had no speech. All the mechanics were there but he had no speech. There was a dysfunction there," Barbara Braun said.

With no special education in Mandan when he was growing up, he went to a special school in Wichita, Kan.

"When you're looking for a place for your child to be educated, there's not a lot of places," Barbara Braun said. "Jimmy needed a lot of structure ... When you have four other children you don't have a lot of structure in your family. Lord knows you're just trying to raise kids ... For him to learn he'd have to be in a place where there isn't a lot of distraction."

In Wichita, he lived in cottages with a house parent and went to school on campus. But it took him a while to be accepted.

"In the meantime, I'm giving this child Ritalin twice a day and he's flipping all over the place because he's hyperactive physically, in the mind and physically, so I have 'artwork' all over the house, all over the walls," Barbara Braun said.

She was holding hands with Jimmy in Wichita when a nurse came to take him. He went through the door, the door closed, she got on a plane back to Mandan and cried all the way home. Jimmy was there for 11 months at a time, coming home for Christmas and two weeks vacation in August.

"So that's Jimmy's first 10 years," Barbara Braun said.

Jimmy came back to Mandan for high school, living in a group home called Eastwood.

"He goes out for wrestling for crying out loud," Barbara Braun said.

She said many with disabilities didn't do anything mainstream.

"But he thought he's going to wrestle and so he did," she said.

In his third meet. he wrestled with a girl.

"He lost the match but it doesn't matter; give him credit for trying," Barbara Braun said.

At first, Barbara Braun questioned why it happened that she had two sons with disabilities.

"It wasn't anything I did or didn't do; it just was," she said. "It was two completely different disabilities in two completely different people."

In a perfect world, Caroline Fehr sees her 16-year-old son, Christopher, living in a Victorian-style house in Grafton, with a giant replica of the Titanic on the front lawn.

She has hope.

Christopher, diagnosed with autism at the age of 3, lives in 10-by-10-foot room, while sharing a small, colorless common area with other young boys in adjoining suites at the Life Skills and Transition Center in the small northeast North Dakota community of Grafton.

The Life Skills and Transition Center, formerly known as the Institution for the Feeble Minded, the Grafton State School and the North Dakota Developmental Center through the years, is a state-operated institution founded in 1903 for people with intellectual and developmental disabilities.

At its height of capacity in the late 1960s, the Grafton State School housed about 1,300 people. In the early 1980s, a successful lawsuit filed by the ARC of North Dakota on behalf of the patients forced the institution to reform its system of care and transition people to community-based services in the state. This year, about 80 adults and youth are living on the institution's grounds with a staff of about 375.

"I like it here," Christopher said in August.

"I do like history," he said in a booming, excited voice, before quickly moving on to other topics. "My favorite food is eating ice cream bars - like Snickers ice cream bars from the machine."

Standing 6 feet tall and weighing about 230 pounds with naturally curly hair just shy of his shoulders, the quick-witted teenager is obsessed with all things history. His favorite time periods are the 19th and early 20th centuries.

Specialists in the field can perceive obsessions as something negative. However, in Christopher's case Caroline Fehr recognized it as one of his strengths.

"In the past he would fixate on something and when that happens people want to change that," Fehr said. Fehr and Protection and Advocacy Project advocate Brenda Ruehl stressed to the staff at LSTC to embrace it and let him grow and expand the interests. They see it as an asset for his future.

"We take his fixation and make it functional," Fehr said. "I think they learned a lot about Christopher. Christopher is a unique person with autism, and they had to learn Christopher's autism. The more they did that the more they realized it was good."

A calming outlet

At 5, Christopher had a vocabulary of six words.

He used to tag along with his dad and his grandfather as they went to rummage sales and estate sales looking for antiques to resell or collect.

Caroline Fehr realizes their son was absorbing everything around him even though he couldn't communicate.

Staff at LSTC were at first resistant to permit Christopher to collect antiques and historic memorabilia and display them on shelves in his freshly painted blue bedroom, but his mom and Ruehl convinced the staff at LSTC to allow the hobby.

Fehr said Christopher frequently visits antique shops in Grafton.

"He knows people, and they know him," Fehr said. "It gives him a way to interact with people. It's an esteem builder."

These days the shelves in his room are stacked with unique items. He is quick to show anyone around his treasures, including such items as old milk jars, lanterns, sailboats, signs, a washboard, elaborate clocks, model trains and a framed Boston Daily Globe front page of the 1912 sinking of the Titanic.

His enthusiasm to show visitors his antiques and collectables usually gets the best of him. When his voice rises to a booming level, a staff person will intervene and hold up two fingers signifying the volume level he should return to. He acknowledges the request before quickly returning to the shelves and pulling down a particular collectable he finds interesting. Pretty soon his voice is back up to a level far beyond two fingers.

"This is a baby scale," said Christopher, pointing to the old, paint-chipped weight gauge. "It's missing the tray. It's a nice piece but ... it's probably from the '40s or '50s. It's sort of like what they had at a hospital."

During the summers, Christopher is given a plot of ground behind the housing unit to plant and harvest a sizable garden of corn, cucumbers and pumpkins. As often as possible, Christopher and a member of the staff drive to area cemeteries so he can roam the plots looking for the oldest headstones.

One day a week, he attends services at Saint John the Evangelist Sacred Heart-Oakwood Church on the LSTC campus as an alter server for the Rev. Tim Carlson.

"I like being an altar server," Christopher said. "I like Father Tim a lot. I want to help him at the chapel. So I wear a robe. But there's something wrong with the color. It was white. It was too plain. I asked Father Tim if I could wear a (vestment), but he won't let me. I'll look like a crinkly old man."

But what may be the largest accommodation by the staff at LSTC for Christopher's behavior program are Popsicle sticks. Not just a few sticks, but thousands. LSTC buys them in bulk.

An interest, which began years ago with large interlocking plastic blocks, evolved into Popsicle sticks and the safe use of a glue gun. Down the hall is an empty storage room designated as his private space for building his structures. Leaning or stacked against the walls are past projects of building he assembled.

"I can build with sticks again," Christopher said. "I've built with Popsicle sticks since I was 8. And collect antiques again. I built Buckingham Palace, Thomas Jefferson building (Monticello), Mount Vernon, the White House and a building at Grafton Public School."

Fehr said he once built a replica of Notre Dame Cathedral nearly the size of a car.

"When I get older I want to build a house," Christopher said. "I want to be an architect and build houses."

"He more than builds; he knows the history behind the building," Fehr said. "It's an area where he is so much brighter than everybody else."

It turns out allowing Christopher to explore his interest in history and hobbies has dramatically lowered his verbal and physical outbursts. Fehr points out the last time the staff at LSTC needed to give Christopher additional medication, known as a PRN, beyond his daily dosages to control his behavior was in March 2015.

The long road for help

For more than three years, LSTC has been Christopher's home. Since the age of 9, Christopher has been placed in a Fargo residential group home for people with disabilities, completed a couple of stays at Prairie St. John's, a psychiatric hospital in Fargo, then shipped to a residential treatment facility in Utah before being admitted to the state institution in Grafton.

Christopher's parents, his five siblings and a Fargo elementary school had endured years of high energy and volatile verbal and physical assaults. Even as the hours of daily respite care for the family increased dramatically, with several medication adjustments, Christopher's fifth-grade year reached a crisis level.

Reluctantly, Caroline and Christopher Sr. placed Christopher in a group home with CHI Friendship, a community-based service provider, just a few blocks from the family home.

"I guess we were in denial for quite a bit of time," Caroline Fehr said. "But then we came to the realization it was more like a death. That we had lost our child."

Though a few blocks from home and seeing him every week, Christopher's absence became heartbreaking and a blessing.

"It was almost like he became a stranger," Caroline Fehr said. "But on the other side of it, it was a real blessing to our family. Because we got to love Christopher and be with Christopher without having to deal with all of the ugliness and all of the behaviors and violent episodes."

Frustration

After more than two years at CHI Friendship, Christopher's unpredictable, violent behavior returned and deteriorated to the point where staff members became afraid for their safety and the safety of others in the group home.

They told the family they could no longer serve him.

With nowhere to turn for care, the Fehr's admitted Christopher in Praire St. Johns for a second time. The long, frustrating search for another provider began for the Fehrs.

Staff at LSTC agreed to take Christopher, but their beds were full. Over the course of four months, 22 care providers, facilities and institutions in the state and nationally declined Christopher's admission due to his history of violence.

"We sent out referral packets and had interviews, and nobody wanted him," Caroline Fehr said. "They would get his file and they were like, 'no, we don't want this.'"

Relief came when a residential treatment facility in Utah had an opening and accepted Christopher. The staff at Copper Hills Youth Center is specially trained to care for youth with autism. With the right combination of medication, behavior intervention and family programming, Christopher stabilized.

Ten months into an 18-month program, Caroline Fehr saw a dramatic charge in her son.

"He was making phenomenal progress," Fehr said. "He was a completely different person."

But then came word from North Dakota Medicaid. They refused to pay for further treatment for Christopher. Five days later, the 13-year-old was discharged and given a plane ticket back to North Dakota.

In the meantime, the Fehrs scrambled to find a placement in state or be forced to readmit Christopher to the psychiatric hospital in Fargo.

This time, LSTC had an opening and, as soon as he landed at Hector International Airport in Fargo, Caroline Fehr drove Christopher to Grafton.

Caroline Fehr said Christopher did well during his honeymoon period. The one demand she made of staff members was for them to call her every time they prepared to give him a PRN and email her any incident reports.

"I was interested to see how well it was going to go," Fehr said.

As a result of the prepared care plan, Christopher's behaviors decreased.

As part of his formal education, Christopher is attending classes as a junior at Grafton High School with the guidance of an individual education program. He has a one-on-one staff person sitting next to him in each regular education classroom and he also spends two class periods in the resource room.

The goal is for Christopher to stay in the school district's adult disability education program until he turns 21.

Mending the family bonds

As he resides at LSTC, the Fehr family has visited Christopher and he has spent nights at the family home in Fargo.

Last Christmas Eve, he stayed overnight and enjoyed the holiday with his parents and siblings. Caroline Fehr noted he wasn't experiencing his usual Christmas cycle of behaviors.

"You have to think, Sept. 15, 2009, that was the first night he left for Friendship," Caroline Fehr said. "He didn't spend another night in our home until Christmas Eve of 2015. That was a huge, remarkable experience for our family. We're making progress here."

Earlier this summer, the family spent two weeks of vacation staying at one of the cottages on campus to be with Christopher. The large family played in the swimming pool at the institution, went on nature hikes, played baseball, fished and attended the Park River community celebration.

In addition to advocating for Christopher's overwhelming needs, the Fehrs also attend to the emotional needs of their other five children.

"The older ones remember Christopher when his behavior was scary to us," Fehr said. "They remember him living at home and then having to leave. They had to struggle with 'Am I next?' We had to reassure them Christopher wasn't sent away because he was bad or naughty; he had to go away because he needed help that we couldn't give him. It's here (LSTC) that people can give what he needs so that he can be awesome and we can have a good time as a family."

Christopher's future

While Fehr said a place such as LTSC is needed, it should not be for everyone.

"You shouldn't have giant building like (LSTC) all over the country because you can't provide what they need somewhere else," she said.

Because of its small size and welcoming people, Fehr said Christopher wants to continue living in Grafton, just in his own apartment or home.

"Grafton is a phenomenal community, like an extended family," she said.

The teenager can get overwhelmed by large cities, such as Fargo. Grafton, with more than 4,300 residents, can offer him a slower, quieter environment.

Once out of the adult education program, Fehr and Ruehl see unlimited possibilities for Christopher. They see him getting a job and renting an apartment.

"Yes, he has autism, but why can't we support him and his autism and give him the same life his siblings are going to have?" Fehr said.

If he is unable to find a community-based service provider by then, he'll remain at LSTC.

"Hopefully, when he turns 21, we can get the team on board," Fehr said. "He's not going to live here (at LSTC) indefinitely. That's not the appropriate setting for him. That's not the type of care he needs."

Fehr and Ruehl say the key to success for Christopher and others with developmental disabilities is for expansion of the community-based providers in other North Dakota communities.

Ruehl says the community providers are wanting to step up and care for people, such as Christopher, but they lack the funding support to hire more qualified staff.

"The fact that those services can be provided by a support team, you just have to make sure you have the supports and the right supports," Ruehl said. "It isn't that providers don't want to do it, providers really do want to provide the care. They have to be able to have the supports to write program plans that meet the needs of the individual."

Christopher's needs are wide and varied. He will need 24-7 support in an apartment to ensure the day-to-day functions go as smoothly as possible. He'll need help making meals, paying bills, buying groceries and any transportation needs.

Just as important, he'll need someone to share in his interests, Ruehl noted.

"Christopher will need someone to make sure everything goes smoothly in his daily life and to be there when he is having a tough day." Once Christopher transitions from the adult education program in a few years, Caroline Fehr wants the option of community-based services to be more accessible.

"You shouldn't be forced to live there," Fehr said. "You should live there because that's what you need, because it's the best for you. Not because you don't have any options." Ruehl sees the institutional atmosphere and structure at LSTC limiting for a person with a disability.

"When you are in a large institutional setting, your opportunities are limited. There's barriers to what you can get done. People do better in the community. People shouldn't have to send their children away to get the services they need. This isn't 1950 anymore. Had Christopher had those (community-based services) at a very young age, he might have had a different outcome."

Often the administration and staff at LSTC refer the institution as a safety net for those people with disabilities needing the most care. Ruehl sees the solution differently.

"You don't need that safety net tucked away up in Grafton, because you have a safety net in the community. They (LSTC) are a safety net because we've created a service delivery system that created that safety net - which is a very expensive safety net."

For Caroline Fehr, she will keep fighting for her son's place in the world. She wants all of her six children to have the same opportunities as everyone else: to be happy and successful in their lives and to reach their promise.

"Why can't Christopher have a life goal like that," Caroline Fehr said. "I don't want to see Christopher's potential taken away from him because supposedly he cannot live in any other place, because it's not available based on funding, training or staff availability."

Since the Life Skills and Transition Center's population peaked at 1,381 in 1960, goals have been set to reduce the number of patients housed there. Now housing 56 adults and 18 children, the center is looking at a new set of goals.

It has not been an easy transition. Overcrowding, poor living conditions and an industry shift to community-based care haunted the '80s, when the facility housed 980 people, which led to a lawsuit that, again, would require the institution to decrease the number of patients living there.

Now it is looking at housing 45 adults and eight kids.

*=with four short-term crisis beds

"The goal is dependent on a couple things," said Paul Kolstoe, director of clinical services and psychology. "Us working with the provider, the private agencies, in discharging people to them, and then trying to slow down the people that come in ... I think one of the biggest things we did to get the population smaller was to slow down the coming in part of it."

When a community provider wants to refer a patient to LSTC, it must give a reason why it cannot provide services to an individual.

"In many cases, the programs are full, they just don't have another bed," Kolstoe said.

Or the staffing resources may not be available to serve a person's needs.

"There's lots of reasons why they might have a denial, and it doesn't seem to be in any one category," Kolstoe said. "The (state) keeps a really close eye on those reasons for denial and tries to look for patterns."

That's how LSTC works toward solutions. For example, the center found it was turning people over, getting them discharged only to have new patients come in. This trend is particularly prominent among the kids served at the center.

New solutions

The center's staff continues to work with private providers to find solutions, according to Klostoe.

It would benefit community providers to have additional behavioral resources, said Klostoe, including generating some "crisis space" across the state, so if someone is having a problem, a psychiatric unit could direct that person to a crisis space. It gives people time to be away from their homes and find a next step that will work for them.

"Right now ... there's not many options there, and we might end up having to be one of the options," Kolstoe said.

One issue is funding.

"You have to find people to pay for the empty space when there's nobody in it," said Kolstoe, indicating novel solutions are being reviewed.

One program that has seen some success is CARES, which was implemented in 1995.

The CARES team from LSTC sends specialized direct care staff across the state to work with providers to ensure people stay in their communities. Kolstoe said 90 percent of CARES referrals end in no admissions to LSTC.

"We've helped teams move on and deal with things," Kolstoe said. "In some cases, it's just holding their hands; they're dealing with a really tough situation."

LSTC Superintendent Sue Foerester said there may be ways to expand that program.

"We have trouble getting beyond about halfway across the state with those folks," Kolstoe said.

For example, LSTC provided support services for two weeks in Williston. For two weeks, staff rotated, meeting in Rugby for the swap.

"When we pay staff time, that has to include their travel time. So to get to Williston, provide services and get back again takes two shifts off of your service," Kolstoe said.

An attempt to establish a western CARES team two bienniums ago failed when bids were too high.

Bismarck providers adapted with a "de facto version" of a CARES team when three providers discovered they were all providing services to clients who lived in the same apartment complex, according to Kolstoe, who said, as a result, they collaborated and needed one night staff for the five or six individuals there.

"They resolved it that way by working together, and there's examples like that across the state," Kolstoe said.

What's next

"It seems like every year we're expanding and doing more and more community stuff," Foerster said. "If that would be our future and that's all we would do besides provide crisis supports, that would be a success."

That could include operating two state-run crisis centers - one for adults and one for kids - and consulting work to community providers.

"And the rest of our facilities would be owned and operated by somebody," Foerster said.

At a Midwestern states conference for those who serve people with developmental disabilities last year, speakers talked about some states closing their facilities.

"They had just decided they were closing by such and such a date and that's it. The chaos it was creating for people served and families was ... very remarkable," said Foerster, explaining LSTC has taken a more gradual approach to deinstitutionalization.

Agency development

"A number of states have outright closed their institution settings. Others have done what we're doing, which is to morph into meeting the needs that our specialized services are able to deliver," Kolstoe said. "We've gone from being an institution to being an agency."

Kolstoe said, in terms of psychology staff, he has himself and two others on campus. He also has six people spread across the state in Bismarck, Minot, three in Fargo and a fourth vacant position.

"We serve about between 250 and 300 people, doing behavioral analysis, helping teams," he said.

At LSTC, there are 374 employees and the majority of them provide services on campus.

Success stories

Kolstoe maintains that, across the board, North Dakota's basic delivery of services "really is best."

LSTC has physical therapy, occupational therapy, dietary services and medical services on campus. It also has a dysphasia team for those with language disorders. The facility has vocational day program services, in which people work both on-campus and off-campus, and also operates community home settings.

LSTC has also been nationally recognized for what it calls "reverse integration" by renting space on campus for other businesses and organizations to use. There are apartments, a North Dakota Department of Transportation driver's license office, daycare centers and a Veterans Affairs clinic.

"From an institutional standpoint, having so many non-related entities using the space and walking around has been great for us because it means you're just part of the community and people start to quit thinking of you as a separate place," Klostoe said.

"I think that reverse integration has come a long way for the acceptance of people with intellectual disabilities," Foerster said.

In addition, there are 20 community worksites in Grafton, including Marvin Windows and Hugo's grocery store.

Community worksites

Autistic patients increase number
of kids in Grafton

By BLAIR EMERSON, BISMARCK TRIBUNE

Some state legislators are willing to put up a fight for the Life Skills and Transition Center in Grafton.

"When they say deinstitutionalize, it really frustrates me. They make it sound like they're locked up in a prison cell; they're not. It's a beautiful facility," said Sen. Tom Campbell, R-Grafton. "They've got a fight on their hands before they close it down. They've got to go through me."

A number of industrious legislators have served Grafton. The Life Skills & Transition Center started with the former Sen. J.C. Cashel, of Walsh County, who was aware there were people - those with developmental disabilities rather than mental illness - who did not belong at the North Dakota State Hospital in Jamestown.

Grafton's economy needed a boost: The LSTC became an economic engine for the area.

"(Cashel) said this will help our economy up in this area, so let's build an institution," said Brent Askvig, director of the North Dakota Center for Persons with Disabilities at Minot State University. "That is the state-of-the-art in the late 1880s."

The number of adults at LSTC has dropped from 149 in 2000 to 60 in 2015. That is projected to drop to 45 adults by 2017, with 68 people receiving services when youth and individuals in local community-based settings are included. The center employs 374 people.

In 1994, regional leaders formed a Developmental Center Regional Steering Committee to identify how to find new uses for the campus, which resulted in leasing space to multiple businesses, development of a Veterans Administration clinic, housing government offices and leasing space to developmental and intellectual disability service providers.

Two of the historic buildings on campus also were redeveloped into 47 affordable apartment units. Due to budget cuts this year, the LSTC was unable to complete demolishing two other buildings.

"We had a very active legislator (in the '80s), Sen. Harvey Tollefson, and one of the things that he was committed to start was the veterans clinic and the housing project," LSTC Superintendent Sue Foerster said.

After the ARC lawsuit during the 1980s, residents moved out in record numbers and community members became concerned about the affect it would have on Grafton.

"People (were) getting nervous; we're going to close. The economy in Grafton is going to be affected. We really need to figure out how to bring in some other business or some other setting," Foerster said.

As the next legislative session and another population goal approaches, the town has turned its attention to LSTC again, hiring Practice Strategy Group in Grand Forks to create another redevelopment plan.

"The community wants to sustain the facilities, and they don't really care who's here," Foerster said. "It doesn't really matter, as long as someone's here employing people and using the facilities."

More housing was one of the main targets identified by this most recent study. Facilities for violent and challenging youth was another potential target industry.

"There's a lot of pressure right now with our budget shortfall to close this even more so or really, really downscale. And we're trying to save it with bringing other businesses there," said Campbell. "We've been looking aggressively for quite a while now. It's just hard to find."

Some lawmakers question whether keeping the center going puts jobs above care.

"There are jobs out there that are needed in the community," said Rep. Mary Schneider, D-Fargo, who was also an attorney involved in the ARC lawsuit which forced the center to reduce its population in favor of community-based care. "There are good people that are working at the institution that are doing high-quality work ... I think it would be a blow to the community that folks who have the power to shut down the institution don't want to face. It may be less about what's best for people with intellectual disabilities and more about the impact that closing the institution might have on the workers and the community."

Campbell disagrees.

Instead, Campbell says "the pendulum has swung too far" toward community-based care, putting LSTC in a position that it can no longer run efficiently.

"There are inefficiencies, because you know that place was built for 3,000 people, now there's 60-some," he said. "To force them all out has just gone a little bit too far, in my opinion."

Now with a budget shortage, Campbell said a push to close the facility could arise again.

"This (LSTC) was targeted when times were good, when we had billions of surplus, so you know this could be on the radar," said Campbell, who is of the school of thought that many at LSTC could not be treated elsewhere, particularly the medically fragile.

"They're pretty challenging. They need really massive care," he said. "They're really the extreme mentally retarded, handicapped ... Nobody wants those people, because that's a whole level of massive care."

Campbell also questions how far the state should have to go to keep those with developmental disabilities in their hometowns, comparing it to parents who have to travel to visit children living in other states. He said he does not think the state should have to make exceptions and additional facility investments closer to homes simply because someone is disabled.

"When I compare it (Grafton) to what state-of-the-art is today, and what kinds of programs and services people with disabilities need today, you still kind of wonder why Grafton is still there," ARC lawsuit attorney Mike Williams counters. "There may be a need for a 24-hour residential program for people with disabilities, but to require families to give up rights to their loved ones and send them off to an isolated treatment facility in Grafton, still makes little sense to me."