Now what? A familiar fear when disabled children turn 26.

For Grant Heckman, the summer of 2015 could have been a time to celebrate.

He was graduating from school and was named prom king for a special education graduation ceremony north of Lansing.

But it also posed a dilemma for his parents, George and Jeanne: What comes next?

Grant Heckman, then 26, had cerebral palsy, could not speak and had significant neurological impairments. He had been in a wheelchair his whole life. Michigan’s state-supported education system for the developmentally disabled ends at age 26, leaving many parents at a loss for how to find support and structure for their adult child after they finish school.

Two years later, according to police accounts, George Heckman, a widely admired elementary school principal, shot his son and then killed himself in a van along a two-track road in rural Montcalm County northeast of Grand Rapids. The van was discovered June 19.

It's unknown why George Heckman did what he did. There was no report of a suicide note.

The case, sadly, wasn’t unique. A recent study found that the disabled are more likely to be victims of violent crime, and 10 people with disabilities in Michigan have been killed by caregivers or parents from 2011 to 2015. The report, by the Boston-based Ruderman Family Foundation, found 219 such cases nationwide during that time.

“This is a very conservative number due to under-reporting and the fact that a victim’s disability is not always made public. The real numbers are likely much higher,” it stated.

Nobody excuses or tries to rationalize the murders. But parents say the void after school year ends for a developmentally disabled adult child –  especially one with severe disabilities –  can be a terrifying time of confusion and anxiety for families. And that’s atop of years of stress.

Luke Pohl, a friend of the Heckman family – and with a developmentally disabled adult child of his own – said he would leave judgment of George Heckman to others. But he said the deaths should be a rallying cry to better understand the struggles of families affected by disabilities.

He likened it to life at the edge of a cliff.

“In a typical family, if you had a cliff in front of you, you would be quite a ways from that cliff,” he told Bridge Magazine.

“In these type of families (with a disabled child) you are almost always at the edge of the cliff because the stress is so great. All it takes is something to knock you off that cliff.”

In addition to his long-term disabilities, news accounts reported that Grant Heckman had  recently suffered from ulcerative colitis, a chronic condition that often leads to abdominal pain and diarrhea mixed with blood.

“Grant suffered a great deal,” Luke’s wife, Janet Pohl, said at the time of the deaths. “I can't even begin to scratch the surface of how much that young man suffered throughout his 28 years.”

Shrinking options

The Pohls said they struggled for years to find structure for their son once he completed school at age 26.

Austin, now 32, has a severe form of autism marked by outbursts of aggressive behavior. It doesn't help that he weighs 230 pounds and can be hard to manage. Through their mutual challenges, they developed a bond with the Heckman family in the same small Clinton County community of Westphalia.

In 2010, the Pohls opened Austin's House, a nonprofit home they hoped would provide a nourishing home for their son and other disabled adults. But Luke Pohl said they had trouble finding staff that would provide the kind of structured support they expected. Staff quit in search of higher wages.

“This is a problem actually in the entire area,” he said. “They just can’t find any help. When the economy is going pretty well and unemployment is low, it's really tough to fill these positions.”

“You are almost always at the edge of the cliff because the stress is so great,” Luke Pohl, father of a developmentally disabled child.

He said Austin’s behavior was “going downhill” and in 2016 they moved him back home.

According to a state report for 2015, there were approximately 46,000 developmentally disabled persons in Michigan. By definition under Michigan’s mental health code, that means substantial limitation in three or more areas of major life activities, including self-care, language, learning and mobility.

In 1971, the Legislature approved standards that require that Michigan residents up to age 26 receive special education, the only state in the union to do so. Most states follow federal law and only require special education up to age 22.

Special education programs for those ages 22 to 26 are provided through the Michigan’s network of 56 intermediate school districts. According to the state Department of Education, there are about 3,600 students in that program in a given year. Its $78 million annual cost is paid by the state.

And while Michigan provides special education support longer than other states, one advocate for the disabled said schools should do more to ease students’ transition into society. That means assisting families in exploring appropriate care options and navigating a system that can seem opaque.

“I lay a lot of this on schools in not informing people and knowing what the possibilities are,” said Dohn Hoyle, director of public policy for The Arc Michigan, a Lansing-based nonprofit advocacy group for those with intellectual and developmental disabilities.

“Why aren't they preparing them for an adult life?”

Robert Fall, special education director for the Clinton County Regional Educational Service Agency, which provides special education services, said the agency does what it can to help families find supportive activity programs for their adult children after they complete school.

But Fall said that can be difficult, especially for those with significant developmental impairments in a rural area like Clinton County.

“Their options are very limited. There’s not a lot out in the community for them,” Fall said.

“There’s not a lot out in the community for them,” Robert Fall, special education director for the Clinton County Regional Educational Service Agency.

For adult students that are profoundly developmentally disabled, Fall said, their classes look nothing like a traditional classroom. The goal may not be academic achievement.

Rather, teachers concentrate on improving motor skills and posture. They seek to improve the ability of students to communicate even if they can’t talk. That could be moving a switch – to signal a choice - with a knee if a student can’t use their hands, or indicating choice with an eye blink.

That kind of close interaction between highly-trained staff and student can be hard to replicate outside school.

Hoyle of the Arc Michigan said the overall care system for the developmentally disabled is still too dependent on a traditional model of care, where the disabled are segregated from the rest of society, whether in separate special education programs or isolated group homes.

“We still have a system that is so segregated and separate,” Hoyle said.

Instead of isolation, Hoyle said, the developmentally disabled can be integrated – with proper support – into society in what is known as “person-centered planning.” He cited the case of a nonverbal blind man in his 50s with cerebral palsy, a person judged to have the intellectual capacity of 6-month-old.

Hoyle said he now lives in an apartment north of Ann Arbor that he shares with another disabled individual, supported by 24-hour care. He previously lived in a nursing facility.

“The people who know him, including his relatives, talk about what a different person he is,” Hoyle said. “He used to pick at his clothes and destroy his clothes. He doesn't do that any more.”

Families also have the option of placing their adult child in a group home, its costs paid by Medicaid. Medicaid also pays for supports in the home. And unlike some other states, Hoyle said, Michigan has no waiting list for those services.

But families like the Pohls say it can be an ordeal trying to find a suitable group home, especially for an adult child with significant needs. Luke Pohl said he and his wife looked into several group homes for the disabled and for their son. They found none with which they were comfortable.

“Some of them were quite bleak,” he said.

End of school, start of mourning

Adding to the fears of these parents, a 2015 report by the state auditor general found that the state agency responsible for inspecting more than 4,000 licensed adult foster care and senior citizen group homes failed to notify authorities in the Michigan Department of Health and Human Services of patient neglect and abuse complaints in 12 of 48 cases.

For families who take on the caregiving load themselves, experts say, the psychological price paid can be considerable.

Indeed, studies show that parents of children with developmental disabilities suffer greater stress levels than other parents and are more likely to experience depression and anxiety.

Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research, sees a similar pattern in family members who care for a loved one with dementia.

“They are a risk for added depression, added anxiety,” Sherman told Bridge Magazine. “We also know that they are at risk for their own mental health because they don’t tend to take care of themselves.

“They don’t get good sleep. They don’t even manage to take the vacations or respite care that they desperately need. They are running on vapors,” she said.

Ann Arbor resident Jill Barker recalls the uncertain time when her two sons – both with cerebral palsy and significant intellectual impairments – completed their special education at age 26.

One son is now 31 and the other 40. Barker said they have been assessed to have the mental capacity of a 1-year-old.

Barker likened the time after her sons finished school to a “state of mourning.”

“When you don’t have something like that for support and backup, it’s very stressful,” Barker said. “It’s hard to know what to do. I don’t think most people would understand how stressful it is unless they have done it.”

“I don’t think most people would understand how stressful it is unless they have done it,” Jill Barker of Ann Arbor, who has two adult developmentally disabled children.
 

As their oldest son neared completion of school, Barker recalled, she and her husband, John, looked around the area for day activity programs for the developmentally disabled. But they found nothing they felt suited their son.

“There wasn’t much there,” she said.

Their children are now enrolled in an Ann Arbor activity program called Just Us Club, started and overseen by families with children with developmental disabilities. With a staff-to-adult ratio of three to one, its board of directors is comprised of parents with children in the program. It is run out of donated church space, so its only cost is that of staff.

It costs the Barkers $300 to $500 a month, but they feel fortunate to have that option.

“It’s very unusual,” Jill Barker said. “There may be a couple other places (in Michigan) like it.”

Eating pizza in heaven

In the meantime, the community of Westphalia is still reeling from the deaths of George and Grant Heckman.

George Heckman was described as a respected member of his church, the community and local school district, where he had served as an elementary school principal for 20 years. He was set to take over at the end of June as superintendent for Pewamo-Westphalia Community Schools.

Grant Heckman, it was said, was beloved by those in the adult special education program. A visitation at the district’s high school gym drew hundreds of people to pay their respects.

Pewamo-Westphalia Schools Superintendent Garth Cooper told a TV station, “I would never say what I think George did is right, but anyone who knows George knows that he loved and cared for Grant.”

And while those were commonly shared community sentiments, the report by the Ruderman Family Foundation concluded that news coverage of murders of the disabled by their caregivers is typically biased in favor of the caregiver.

“Journalists, consciously or unconsciously, often write stories that build sympathy for the murderer and the circumstances that led them to their crime, while the person with a disability is erased from the story,” it stated.

“I have not seen a story that tells anything about the victim,” the study’s co-author, David M. Perry, told Bridge Magazine.

“I would not want my obituary to be a list of symptoms.”

In fact, the actual obituary for Grant Heckman was far more than that.

“Grant loved to be taken on walks and rides and had a very special bond with Grandpa Smith, who would walk him for miles,” it read.

“When Grant smiled or laughed, it was a joyous occasion to be shared throughout the family, the song, ‘Somewhere Over the Rainbow’ never failed to make him smile. There is no doubt that he is talking, running, and eating pizza in Heaven right now.”