Lack of care forces adult with autism to leave U.P.
Journal Staff Writers
MARQUETTE — Many employers are finding it hard to attract help, but when you can’t find enough people to help care for your adult son who has autism, it’s a little more dire than not having somebody wait on your table quickly enough at your favorite local restaurant.
Virginia Killough and her son Alexander Smith, both from Marquette, whose story was featured in a Jan. 23 Mining Journal article, continues to find herself in that predicament, so Al will have to move out of the area.
Not long ago, Al, who is 32 years old, was at Upper Peninsula Health System-Marquette for 110 days because she didn’t have staff to bring him home, and when he was finally brought home in February, Killough said her son was overmedicated.
He also was on a treatment order for six months, which meant Killough, a physician, couldn’t change his medication. She finally obtained a telemedicine appointment, where she learned she had to get a psychiatrist close to home.
“There aren’t any anywhere,” Killough said.
Smith was taken downstate to a hospital, then transferred to another facility in June. Without telling Killough, Al was taken off of all his medications at one time. Two days later, Killough said her son had a seizure from the withdrawal.
Killough then filed a Medicare discharge appeal, but she said Medicare determined that the proposed hospital discharge wasn’t appropriate. However, her son eventually was discharged, even though he had oozing sores on his arm from a hospital-acquired infection. Killough then filed a quality of care complaint with Medicare, which indicated that the hospital would have to be “re-educated” or sanctioned.
However, Killough eventually brought Smith, who is nonverbal, home, but problems still remain.
“We still don’t have enough staff,” said the 70-year-old Killough — who works with staff to provide the 16 hours of daily care her son needs. “We’ve just been struggling. I work 60 to 90 hours a week, and I just can’t do it anymore.”
Ideally, her son’s care requires a staff of 8 to 10 people.
In an email to Elizabeth Hertel, director of the Michigan Department of Health and Human Services, she wrote, “I have been forced to look into specialized residential placement for Al even though I know, due to Al’s extreme sensory issues, that he is best off living in his own controlled environment in his home, and it certainly is the least restrictive environment where he has been historically successful. However, to my dismay, I have been told repeatedly that there are no beds available for Al anywhere in the state.”
Killough said she has reached out to Gov. Gretchen Whitmer’s office as well as the offices of state Sen. Ed McBroom, R-Waucedah Township, and state Rep. Jenn Hill, D-Marquette, regarding her situation. A spokesperson from Hill’s office indicated that staff has been able to contact Killough and was looking into the situation, which Killough acknowledged is the case.
Smith’s care, Killough said, is paid through a Medicaid waiver.
The problem of attracting staff, though, remains.
It’s not for lack of trying.
Killough said she has reached out on Facebook, on Indeed, to Northern Michigan University and the local unemployment office, but had not gotten a lead all summer.
This is in spite of the fact that Killough pays $18 an hour for help, with training provided.
Another option for getting staff, she noted, is a provider in downstate Midland where she would move Smith.
Killough called that a “tremendous” move.
“I would go with him initially, but I wouldn’t stay,” she said.
Killough said Smith, who was diagnosed with a seizure disorder and is getting medications, can make his meals and take care of his self-care routine at home with supervision, but no longer can go to the gym.
“We don’t have enough people now to take him out in the community and do things,” Killough said.
Other situations can arise with her son, too.
One afternoon he was sitting on his swing on the porch when someone across the street sneezed.
“That got him upset,” Killough said. “He’s very sensitive.”
Killough said she is trying to bring attention to her situation, which affects others in Michigan.
“We’re just totally desperate, and we’re not the only ones,” Killough said.
According to the Autism Alliance of Michigan website, there’s an estimated 50,000 people with autism across the state. Approximately one-third, or 16,500, are school-age children.
Another worry for Killough: What if something happens to her?
“Currently I don’t have a standby guardian for him,” said Killough, although she has set up a special-needs trust for Al.
Jan Lampman, who owns Community Drive and works as an advocate and navigator in the area of disability, shares Killough’s concerns.
“It continues to be a struggle throughout the state of Michigan to find enough direct support professional’s who stay on the job,” Lampman said. “This means that families like Al and Virginia are at risk. Virginia cannot keep up the pace ,and without her who does Al have?”
Killough said in an email on Monday that Al will be moving downstate on Monday, Oct. 9.
“I’ve tried to frame it positively, and he seems happy and excited. I don’t know if he realizes that I won’t be staying,” she said. “It sounds like a good opportunity for growth and inclusion. His own house and trained and experienced support staff. We’ll have to see how the move affects us both.”
Killough said Al would “receive support and encouragement to participate in many activities not available here.”
“It should not be impossible to live here if you have need of support but in our experience it certainly is,” she said. “I have tried everything to make it work for years.”
Dreyma Beronja can be reached at 906-228-2500 ext. 548. Their email address is email@example.com.
Christie Mastric contributed to this story prior to her retirement.