Help for Al
Mother: Gap in autism care needs to be closed
By CHRISTIE MASTRIC
Journal Staff Writer
MARQUETTE — It’s bad enough to watch a child suffer, but to not have the desired daily contact adds more challenges to the unfortunate circumstances.
Marquette resident Virginia Killough knows that heartache.
Her 32-year-old son, Al, has autism, but has been living in his own house in town since 2009.
“He goes to the gym three times a week and works out with a personal trainer, and he goes to museums and restaurants, does his shopping — and has a life,” Killough said.
Because her son has sensory issues and a Medicaid waiver, he has 24/7 assistance in his own home.
But as what happened with the rest of the world, the beginning of the COVID-19 pandemic in 2020 changed things.
“I wasn’t able to see him as much during that time because they were not having people in the house, that sort of thing, because of COVID,” Killough said. “Something happened, and he became unsettled.”
Killough went to Pathways Community Mental Health, which provides behavioral health services for children, adults and families, and asked for assistance to figure out what was wrong with her son.
“Things kind of spiraled,” she said. “We did all the medical screening, trying to figure out if he’s having pain or something like that.”
However, she said nothing specific was discovered and multiple medications were tried.
Communication is another obstacle.
“He doesn’t talk very much, and he’s not able to express how he feels, or even if he’s having pain,” Killough said. “So, I wasn’t able to find help.”
This is when she discovered “where all the holes are” in the medical care system.
On June 1, her son was hospitalized at UP Health System-Marquette, and she stayed with him for 15 days.
Killough acknowledged the staff was “very nice,” but the emergency department was not set up for Al’s situation.
“I had to fight to get him out at that time,” Killough said, with Pathways wanting to send him to a state hospital, a step she didn’t think was appropriate for him.
Additionally, Adult Protective Services, she noted, didn’t want her to take Al home because APS didn’t think it was safe, and it would take away her guardianship.
However, after many meetings and intervention from Gov. Gretchen Whitmer’s office, Killough was able to take him home and build a new staff, but her son still was struggling with agitation. On Oct. 27, he went back into the hospital.
“When he was 18, we debated what would be best for him, and because of his sensory issues and everything, we determined it would be best for him to live in his own space and have control of that space,” Killough said.
At UPHS in October, though, he stayed in the emergency department for three or four days before he was transferred to the adult psychiatric unit where he is now.
Killough, a retired physician, has plenty of experience in the medical field when it comes to autism. Her past positions include belonging to the Special Education Parent Advisory Committee at the Marquette-Alger Educational Services Agency; being part of the Special Education Advisory Committee to the Michigan Board of Education, serving as chair in her final year and playing a pivotal role in initiating the Statewide Autism Resources and Training Project out of Grand Valley State University, funded by the MDOE; serving as a member and board president of the Autism Society of Michigan; serving as interim director of the Superior Alliance for Independent Living; and founding the Autism Parents Support and Action Group.
Regarding her son, she tried to get help to determine the proper medications to stabilize him.
In mid-December, it was determined to give her son medication that sedates him, but causes tremors.
“And it’s not good for him,” said Killough, who pointed out that she would like to see him weaned off the medication after leaving the hospital.
Killough tries to visit or call him every day, but that’s not always possible due to the staffing situation, she said.
Also in December, the hospital petitioned the probate court — for reasons she still does not understand — and changed his hospitalization status from voluntary to involuntary.
“That gives them the power to send him somewhere without my consent,” Killough said.
The status was determined to be for 60 days, but a judge can renew it, she said.
“I was OK with him being there,” Killough said. “I agreed that that was his safest place for him to be. I was trying to help with the medications. Usually if someone doesn’t want to get out of the hospital or when they don’t think it’s safe, or is refusing medication or something like that, that’s when they get a treatment order.”
UP Health System-Marquette issued a statement on how it handles transitional and long-term care in general.
“At UP Health System-Marquette, our top priority is to provide safe, high-quality care to the patients we serve, which includes the protection of their privacy,” it said. “While we cannot comment on any specific patient matter, we can provide some information related to our processes.
“In the event a patient’s care team determines transitional or long-term care is needed, the patient’s placement is dependent upon a safe discharge plan, availability of needed resources, and in some cases, directives from authorized agencies or applicable courts. While each patient case is unique, our physicians and staff evaluate the resources available and determine the most appropriate solution for each patient.
“As always, delivering high-quality care to our patients remains our primary focus, and we are grateful to our entire health care team for how tirelessly they work to ensure that the people we serve have access to the care they need.”
Pathways did not respond to multiple requests for comment.
A gap in care
“The hospital looked, Pathways has looked, all over the state for any kind of treatment center that would be appropriate, that would help stabilize him so that he could go back to his home,” Killough said.
She called the situation “the No. 1 systemic failure.”
“Michigan does not have a continuum of services for people who have developmental disabilities,” Killough said.
In fact, she noted that most of them, at some point, will have a crisis of some kind.
“We need professionals trained and available to treat people, and we need facilities that are suitable for a temporary transitional place — and they don’t exist in the state of Michigan,” Killough said.
Staying sedated or hospitalized for the remainder of a patient’s day(s), she said, is “old thinking.”
Killough questioned why a competent professional is not called to come to the Upper Peninsula for what it costs to put her son in the hospital for weeks.
Background training also is important.
“The psychiatrists don’t know autism,” Killough said. “They’re not used to working with developmental disabilities, and they admit that freely, which is why I was reaching out to some experts out of state.”
She acknowledged that when there are services for autism, they’re for children.
What also doesn’t exist, Killough said, are facilities to temporarily send people — such as her son– as well as professionals to come to the area to help him.
“They just don’t exist,” she said. “They were never developed.”
Killough mentioned another facet of the issue.
“The state does not support direct-care professionals so that it’s a viable, stable workforce, and that has got to happen,” she said. “I can give my staff pretty good hourly pay, better than most, with Al’s budget, but they don’t have benefits. They don’t have that stability.”
The only viable alternative for her son, Killough said, is to bring him home, but she needs 12 to 14 staff members, who work in shifts.
For Killough, that’s still probably not the perfect solution.
It’s an overlapping problem, she said, because if she brings him home and he still has issues, then he goes back to the hospital because no “meaningful intervention” has been made.
Jan Lampman, owner of downstate Midland-based Community Drive, which advocates for direct-care issues throughout Michigan, agrees with Killough in terms of finding and keeping direct-support professionals to work with those with development disabilities.
“There is a severe worker shortage, which has caused a crisis for individuals who need support,” Lampman said in an email. “There are individuals and families all over Michigan who do not have the support that they need and simply can not find workers to provide the service.”
A huge part of the issue, she said, is that those workers are not paid a living wage in most cases. Another part is that often there is little training or professional development.
“The job is often very challenging, so without training and opportunity to grow in the position, staff leave for better pay and better working conditions,” Lampman said. “We must prioritize this workforce if we hope to provide for the needs of our most vulnerable citizens. That means living wages, but also benefits such as health insurance and paid time off.
“It means creating a career path, so that people who enter the workforce can grow and develop in a career that continues to support people with disabilities to live their best lives. When we prioritize the workforce, we are also prioritizing those citizens with disabilities who desperately need support to live.”
Killough said that during her daily visits to Al, she shaves him and takes care of his grooming, but he has gained weight and his hair is matted — and her son wants to go back to “Al’s house.”
“I know my son — and this is not him,” she said.
Worse, the problem is not unique to them.
“We are not the only ones,” Killough said.
Christie Mastric can be reached at 906-228-2500, ext. 250. Her email address is firstname.lastname@example.org.