On Wednesday, Jovan Harris arrived at work at 8 a.m. — at a home on a quiet residential street in Mt. Lebanon where he helps care for three men with intellectual disabilities. His colleague who worked the overnight shift made sure they all had their correct medications, were dressed and ate breakfast. After getting them on the bus to their day programs or jobs, Mr. Harris started the paperwork portion of his day: making sure their finances are in order, bills are paid, Medicaid billing documents are in order, and medical appointments are scheduled. At 1:30, he picked up one man from his job at Goodwill. When the others got home, they packed their lunches for the next day — all three have special diets — and helped with some afternoon activities. At 5:30 in the evening and Mr. Harris was cooking dinner — pork chops, peas, and sweet potato fries. He was to be there until his colleague arrived at 10 p.m.
Caring for six adults with intellectual disabilities in two different homes during the week is a tough job, but Mr. Harris — known to his family and those he cares for as “Jojo” — loves it. “It's a fulfilling job. You have people that depend on you,” said Mr. Harris, 31, of McKees Rocks, a senior direct support professional with the Emmaus Community of Pittsburgh who has been in the field for six years. But advocates and family members of people with intellectual disabilities say there aren’t nearly enough people doing the job Mr. Harris and his co-workers do -— and because of economic and demographic factors, the issue has reached crisis proportions. Providers say it is difficult for them to recruit and keep these direct support professionals — the front line workers who care for people with intellectual disabilities in their homes and communities. Statewide nonprofit Pennsylvania Advocacy and Resources for Autism and Intellectual Disability estimates that of 35,000 DSP positions, 4,200 are vacant and 9,500 DSPs leave the workforce annually. While rewarding, the job of a DSP is often relatively low-paying and extremely challenging — and is really more like five or six jobs than one, providers say. “It’s much more complicated than just being a caregiver and just keeping somebody safe, and that’s hard enough, with some of the people we have who have really complex needs, either behaviorally or medically,” said Stacey Dowden, director of intellectual & developmental disabilities services at Milestone Centers. “What is asked of the DSPs is significantly more than that.” DSPs must assist with people’s physical needs that they might not be able to handle for themselves, such as going to the bathroom. They must also attend to the medical needs of the people they care for, such as administering medication or insulin.
Many DSPs also have to handle household duties like menu planning, shopping for food and preparing healthy meals, sometimes for individuals who have dietary restrictions or might not be able to fully chew their food. They must carry money to pay for the groceries and make sure people’s funds are properly accounted for, as well as assisting with household chores like cleaning and laundry. In some cases, a DSP might have to be able to drive a lift van that can carry a wheelchair for trips like medical appointments, shopping for clothes, haircuts, or going to church. They must document all their activities and note any problems. All this, for about $10 to $12 an hour.
Low wages, high turnover impact care
While many people stay in the job because they love caring for others, low wages mean many workers have second jobs or must use public benefits — such as food stamps or housing assistance — to make ends meet. Most DSPs are not unionized, though a small percentage are, said Amy Hewitt, a Minnesota-based researcher who studies community services and supports for people with intellectual and developmental disabilities. The average hourly wage is $10.92 — about $22,710 a year — according to the federal Bureau of Labor Statistics, which classifies DSPs in the broader category of personal care aides. Such low wages lead to high turnover in the field — advocacy group Pennsylvania Advocacy and Resources for Autism and Intellectual Disability estimates the DSP turnover rate is about 25 percent annually. “If I could reduce my turnover, I could afford to pay more, but you get that chicken-and-egg thing — I can’t afford to pay more until I reduce the turnover, but I can't reduce the turnover because I can’t afford to pay more,” said Ms. Dowden. High staff turnover also means the quality of the relationship between DSPs and those they care for can suffer.
Carol Tabas of Squirrel Hill is usually searching for caregivers who can help care for her son Chet, 33, in their home. “I spend my life searching for caregivers, that's my job,” she said. Her son is not able to get out of bed without assistance and needs aid with activities such as using the bathroom, brushing his teeth, bathing and getting dressed. He can’t speak but can communicate some preferences non-verbally, such as which shirt he wants to wear or what he would like to eat for lunch. It takes time for caregivers to learn this, his mother said. “It can be devastating if someone has to leave, if they aren't making enough money to survive,” Ms. Tabas said.
DSP wages ultimately come from Medicaid dollars — the joint federal-state program that pays for care for disabled and low-income individuals. The rates paid to providers are set by the state and have not increased in 10 years, since the state's 2007-2008 budget, and thus wages for DSPs have flatlined, providers say. “They're not paid enough. The reality of it is they're just not paid enough,” said state Rep. Dan Miller, D-Mt. Lebanon, who is a co-chair of the House Autism and Intellectual Disabilities Caucus. The problem is not unique to Pennsylvania. Essentially, “it requires an appropriation at the state level for any increase in wages,” said Ms. Hewitt, the Minnesota-based researcher who studies the issue. Pennsylvania’s 2017-2018 spending plan approved by legislators in June does include rate increases which went into effect July 1, though the budget remains incomplete because a revenue package has only been passed by the Senate and not the House. Rate increases of about $200 million total will be paid to providers and hopefully ultimately passed on to workers in the form of higher wages, said Nancy Thaler, deputy secretary for the Office of Developmental Programs at the state’s Department of Human Services. Rates increased by 5 to 10 percent -— though that won’t necessarily translate into wage increases of the same amount — she said. “It's a significant amount of money,” she said. In addition to the financial problems that can make it hard for DSPs to remain in the field, there’s also demographic and other factors. Most DSPs don't walk in the door with much training about how to care for people with disabilities, said Karen Jacobsen, executive director of Emmaus Community of Pittsburgh. At the same time, other care-giving jobs can pay better.
“We are in competition with hospitals and nursing homes,” said Nancy Murray, president of The Arc of Greater Pittsburgh at ACHIEVA. “We're in competition for the same pool of people.” Additionally, the demographic group that tends to perform care-giving jobs, historically women ages 18 to 50, is not growing as rapidly as the number of elderly Americans who will need aid, she said.
Ms. Jacobsen also sees a major obstacle in that society doesn't value caregiving as a profession, instead seeing it as thankless work they hope someone else is there to do, she said. “I think our society undervalues caregiving in general,” she said.
Kate Giammarise: email@example.com or 412-263-3909 or on Twitter @KateGiammarise.
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