SEARSPORT, Maine — When Jonathan Grinstein-Camacho moved to Searsport from Massachusetts with his parents last June, the 27-year-old with autism was a shy, smart man who liked Japanese anime, visiting grocery stores and teaching himself Morse code.

But his relatively stable life soon would unravel, coming to an abrupt and tragic end just months after his family made their home in Maine.

By early December, Jonathan, also diagnosed with schizoaffective bipolar disorder, was in crisis. He told his parents there was a very narrow door between fantasy and reality. He wanted to go through it.

He had endured frustrating months waiting for the mental health services he relied on in Massachusetts to become available to him in Maine. A constellation of forces worked against him. Bureaucratic delays in obtaining MaineCare insurance coverage. No coordination between states to maintain his carefully calibrated care. A dearth of psychiatrists to treat him.

His family watched Jonathan’s mental health deteriorate. Holidays always were hard for him, and on Thanksgiving he had retreated to his room, sleeping on the floor amid piles of unpacked boxes, each labeled with its contents. Some he carefully had tagged as “trash.”

“Jonno didn’t fully unpack because he didn’t feel settled,” said his mother, Christina Camacho.

She and his father, David Grinstein, kept a close eye on him. As the autumn wore on, they started trying to watch their son each and every minute.

Finally, on Dec. 2, six months after the family’s move, a case manager visited Jonathan. It marked only his second interaction with Maine’s mental health system, after an initial assessment in June. She told her brand-new client he would have to wait a month before he could even make an appointment with a psychiatrist.

The next day, Jonathan and his father were getting ready to go out. Instead of a jacket, Jonathan draped a towel around his shoulders and wore only one shoe. His parents asked him to get more appropriate clothes.

They left him alone for just a few moments.

Jonathan slipped out the door, got in the family car and vanished.

His mother and father called the police to report their missing son. Later, they learned he had turned up at the Belfast Variety store, where concerned employees had called police upon finding him barefoot and wandering the crowded aisles.

Police talked to Jonathan and notified his worried parents. An officer asked Jonathan to wait in the family car, according to Belfast Police Chief Mike McFadden. But when the police officer turned away to radio dispatch, Jonathan disappeared a second time, this time on foot.

Jonathan had a knack for hiding, according to his mother. When he wanted to, he could disappear.

Police searched through backyards and walked to downtown Belfast, McFadden said. They continued looking for him throughout the long, cold night.

On the morning of Dec. 4, a woman walking her dog spotted Jonathan’s body. He was lying face down in a small stream, within sight of the Belfast Variety store. It was later determined he had accidentally drowned.

His family believes Jonathan’s death could have been avoided. They tried to connect him with mental health services in Maine months before they moved, but said they were met with red tape and long delays. They blame this system for his death.

“My first thought was that this system murdered him. I toned it down to negligent homicide,” Christina Camacho said. “I remember being told there are a few cracks and that sometimes people fall through. For my family, that was no crack. That was the Grand Canyon. That was the San Andreas Fault. There must be some way to prevent this from happening to any other family ever again.”

Increase of autism

Since the turn of the 21st century, the share of people with autism who receive services through MaineCare has exploded by more than 848 percent. As the diagnosis of autism spectrum disorders has grown, so has the challenge of providing patients with the mental health services they need under the health insurance program for low-income residents.

Jonathan’s family, and some mental health advocates, say Maine is failing vulnerable residents when they need help the most.

Jenna Mehnert, executive director of the Maine affiliate of the National Alliance on Mental Illness, lived in Pennsylvania before returning to her home state of Maine with her family, including a teenage son diagnosed with autism. When they moved back, she was horrified by the lack of services here.

“If I had a child with more significant needs, I would get out of Maine,” she said. “I am grateful that my child’s early years were in a state like Pennsylvania, with comprehensive, wrap-around expertise. I would not live in Maine if my child’s needs were more acute.”

Treating autism requires expertise, Mehnert said, and Maine — a rural state with a small population — faces a critical shortage of mental health professionals, especially north of Waterville. The federal government estimates that fewer than 40 percent of Maine residents who need the help of a psychiatrist can get it.

Another problem is that more of the state’s services are geared to children with autism, rather than adults like Jonathan, Mehnert said.

“As bad as it is and as scary as it is, I’m not surprised that family had the experience they did,” she said. “People with autism can function well, if they get whatever support they need. As a state, we have a long way to go to appropriately meet the needs of people on the spectrum.”

Maine is required by the state and federal governments to provide children with disabilities access to the services they need, according to Nancy Cronin of the Maine Developmental Disabilities Council. But when children grow up, services often fall off a cliff.

“Adults aren’t entitled to anything at all,” she said.

The shortage of services dates to the 1980s, when the state closed Pineland, its last institution for people with disabilities. Care for those individuals largely shifted to local communities, which struggle to this day to provide adequate services.

People who qualify can access services through MaineCare. As adults, some wait years for the assistance, which the Maine Department of Health and Human Services has acknowledged they’re entitled to but historically hasn’t found enough money to fully fund.

Waitlists for those services date to 2008.

Gov. Paul LePage’s biennial budget sought a $46 million increase in funding to reduce waiting lists for services for the intellectually and developmentally disabled, said Samantha Edwards, a spokeswoman for Maine DHHS.

“Ultimately, the Legislature only funded a portion of the request ($16 million for the waitlists), leaving considerable funding requirements in the program for our neediest and most vulnerable,” she wrote in an email to the BDN.

She declined to comment on Jonathan’s death, saying the agency cannot speak about specific cases.

Dashed dreams

Jonathan’s parents moved to Maine to be closer to their daughter, Eliana Johnston, and her family, especially their feisty toddler granddaughter, Elizabeth.

They sold their house in Massachusetts and spent nearly every penny they had constructing a new home that’s fully accessible to Camacho, who uses a wheelchair. Jonathan, the youngest of their three children, liked both the house design and Searsport, with its small, walkable village center.

Grinstein, an academic, teaches math, statistics and physics part-time at Husson University. Camacho, a warm, spiritual woman, believes Jonathan was in many ways like herself.

“Jonathan was super shy, couldn’t tolerate transitions, was noticeably immature, couldn’t tolerate bright lights and was more academically gifted,” she said, describing some of her son’s lifelong issues. “Like his mother. So Jonno struck me as perfectly fine.”

But the red-headed young man wasn’t perfectly fine. Long before he moved to Maine, erratic behavior in Massachusetts had landed him in the hospital multiple times. A few years ago, he was diagnosed with schizoaffective bipolar disorder overlaid on autism. Jonathan began receiving federal disability benefits and qualified for services through MassHealth, that state’s combined Medicaid and State Children’s Health Insurance Program.

In 2014, during Jonathan’s third hospitalization, medical and mental health professionals in Massachusetts had a breakthrough, Camacho recalled.

“They recognized the mental illness really fell away with proper care for autism,” she said.

Every week, an autism specialist visited Jonathan, and he went to a psychiatrist every two weeks. He was prescribed medication — tiny doses of Latuda, an antipsychotic medicine used to treat bipolar disorder — that also helped to keep the door to his “fantasyland” shut, according to his mother. All of that care was arranged and paid for under MassHealth.

Months before the family moved, Johnston urged her mother and father to call MaineCare to try to get Jonathan into the state’s mental health care system.

But they were stymied. Before Jonathan could be enrolled in MaineCare, the family had to move here. There was no assurance that the hard transition to a new home would be softened by any help in Maine.

Given the special challenges of people with autism, including difficulty with transitions, the two states should have coordinated for the best possible outcome, Johnston said.

“There should have been a care team put in place for the transition,” she said. “Maine should have come up with a psychiatrist and a home care staff, and they should have met with his Massachusetts team.”

Instead, Jonathan had an intake review in June with a Bangor-area mental health practitioner, who told the family to expect a 90-day wait to qualify him for mental health services. Then, at the end of that period, the family learned there would be another 90-day wait.

Further complicating matters was that neither of Jonathan’s parents made, perhaps, the perfect advocate for him. Camacho has health concerns of her own, and Grinstein is a private man who may not have an easy time speaking of intimate family troubles.

“My dad was trying to make phone calls on his behalf,” Johnston said. “I don’t know what calls, or how often, or when. I knew they were working on finding him psychiatric care, because he needed it.”

Maine officials caution, too, that some parts of Jonathan’s story are not indicative of broader problems within Maine’s social service system, and that many aspects of the family’s experience seem unique. The Grinstein-Camacho family may not have taken advantage of all the options there are in Maine for people in crisis, for one thing, and it is unclear to some mental health experts why it took them so long to get Jonathan’s MaineCare card.

Still, while the details of the family’s case may be one-of-a-kind, their problems are shared by many Mainers, Eliana Johnston said.

“The system is broken,” she said. “People with mental health symptoms can’t wait three or six months. They rely on care to maintain stability in their lives.”

After his long wait without services, Jonathan finally received his MaineCare card in November 2015. He qualified for both supported housing, such as a group home or apartment, and for services geared toward families like his who want to care for adult children with disabilities at home, including long-term job coaches and day programs.

At that time, between 1,200 and 1,400 people were on the waitlist for supported housing, Cronin said. There was no waitlist for the in-home services Jonathan’s family preferred, but by that time, after the long MaineCare application delays, he was already in crisis.

His sister said she does not know why it took so long for her brother to qualify for MaineCare, the state’s version of the federal Medicaid program.

“People on federal disability should be able to move from state to state within the country without being penalized, without having access to the care you need,” she said. “This is discrimination against people with disabilities, and it needs to change immediately.”

But Medicaid requires that people who move from one state to another reapply, Cronin said.

“If I move away, I lose my services,” she said. “Moving to any state, a person would have exactly the same problem.”

A “tsunami” of people with autism is cresting across the country, straining government budgets and the providers who care for them, Cronin said.

“In Maine, [Jonathan] came and he got on a list,” she said. “He was not known. Was the state aware of what the risk was, for his safety and health?”

The case manager who saw Jonathan the day before he ran away and died was from Broadreach Family and Community Services, a Belfast-based private, nonprofit agency. Bob Garcia, director of behavioral health at the agency, declined to speak about Jonathan’s particular case, but said many Mainers with mental health challenges require significant support to thrive in their daily lives.

“Why isn’t everyone who needs these services eligible to receive them? That’s the question,” he said. “The simple answer is there just isn’t enough money to pay for the services.”

‘He was gone’

On the final evening of Jonathan’s life, Camacho said she experienced a vision of her son that has stuck with her. After she and her husband were told that police would keep searching and to file a missing person report in the morning, they went to sleep. But at 2:30 in the morning, Camacho awakened with a start.

“He was cold and wet and scared and needing Mommy and Daddy,” she said of the vision. “I think he outsmarted himself because he was so good at hiding.”

Then she thought she heard his chuckle.

“I saw him in a triumphant dancer’s pose with a big grin,” she recalled. “It hit me then that he was gone.”

In the weeks since Jonathan’s death, his family has tried to find ways to honor his life. They spread his ashes in a raspberry patch behind their home as part of a small ceremony.

“Like him, the raspberries are very, very sweet,” his mother said. “Like his red hair, the raspberry patch is a little bit wild.”

They cleaned out his room, finally unpacking all of the cardboard boxes. They now call it the “sunrise room,” because of the morning sun that pours through its windows.

“Or the ‘son rise,’” Camacho said with a smile. “It doesn’t matter how you spell it.”

The family is also involved in a project that gives them hope for the future of other young people with autism. A local woman, Linda Lee, executive director and co-founder of the Help Autism Now Society, hopes to create a shared living community in Belfast for people both with and without disabilities. She wants to call it “Jonno’s Place,” in honor of their lost son.

A University of Maine class is supporting the initiative, spending the spring semester on plans to make Jonno’s Place a reality.

Jonathan’s parents are touched by the effort.

“I feel that through Jonno’s Place I’m getting to know more grandchildren than I ever could have had,” Camacho said. “If I sat here and did nothing but mourned the rest of my life, Jonno’s life would have been pointless and meaningless. Some good’s got to come of it.”