As Lawrence Brown turns the crank, Mark Hubbard is slowly hoisted in a body sling from his wheelchair into the air. Brown pushes the metal frame of the lift so that Hubbard is suspended over his bed. Reversing the crank, he lowers Hubbard gently down onto the bed.
Transferring Hubbard from one place to another is just one of the ways Brown helps his friend. Though Brown too is confined to a wheelchair, he shops, cooks, cleans, manages bills, bathes and dresses Hubbard. He drives him to medical appointments and assists him in making decisions about his medical care. Brown also takes Hubbard to Taekwondo classes, church, movies and other social activities to raise his spirits.
“I am the only one in Mark’s life who he knows well enough and trusts enough to be a caregiver,” said Brown.
Hubbard developed cerebral palsy in childhood and lost the use of his limbs. Brown said that although “he seems normal to me,” according to his medical records Hubbard has cognitive disabilities as a result of the disease, including significant speech impairment.
Brown, a University of Wisconsin Whitewater graduate, has been disabled by multiple sclerosis, diabetes and hypertension since he was 21. He has the use of his upper body and is able to drive his van, which is adapted to accommodate a wheelchair.
Brown and Hubbard, who are in their 40s, can live independently because each receives government assistance from a combination of sources including Social Security Disability Insurance (SSDI), Medicare and IRIS, Wisconsin’s long term care program for seniors and adults with disabilities. Adults of any age are automatically enrolled in Medicare after two years as SSDI recipients.
IRIS allows recipients to hire, supervise and dismiss their own caregivers. It also provides a flexible budget from which they can purchase goods and services. Hubbard’s IRIS coverage provides Brown with some compensation for his care-giving services, though it amounts to only about a quarter of what an agency caregiver would receive, Brown said.
At a town hall meeting this summer sponsored by the Wisconsin Department of Health Services (DHS) that Hubbard and Brown attended, the state Medicaid director, Brett Davis, said that impending changes to BadgerCare Plus would not affect people with disabilities.
No changes to IRIS are planned, according to Claire Smith, a DHS spokesperson.
While there appears to be no immediate threat to their current living situation, Hubbard and Brown nevertheless are concerned that with budget cuts over time rules will change and they no longer will be able to live independently. Brown is the vice president of People First Milwaukee, a grassroots advocacy group for people with disabilities.
Brown fears that changes to the healthcare system will eventually include tighter eligibility requirements, higher deductibles, more charges for cost sharing and fewer services. For example, he noted that under Gov. Scott Walker’s administration, Hubbard has seen cuts to the assistance he receives for transportation expenses.
He is particularly worried that people such as Hubbard would be required to get their personal assistance from a certified agency caregiver.
At the town hall meeting, Brown made an impassioned appeal that the state not change the system that permits family and friends of people with disabilities to act as caregivers and be compensated for their efforts. He argued that the state could offer certification courses for family members and friends who provide personal care to people with disabilities. Such care can be specifically tailored to the person who needs it and is much less expensive for the government, he said.
“In my case, I’ve known Mark for 22 years and I know his situation inside out. So I am better able to assist him with daily routine things [than a caregiver employed by an agency would be],” Brown said.
He added that when he gets to the point where he needs more care, he would like the freedom to choose his own caregiver, just as Hubbard chose him.