Frayed Lifeline
In a Group Home, Caring for Disabled Takes Toll on 'Ma'
With Trio Dependent on Her, Sarah Ahmed Must Juggle In $12.06-an-Hour Job
A Policy Shift's Costly Legacy
By CLARE ANSBERRY
Staff Reporter of THE WALL STREET JOURNAL
December 15, 2004; Page A1
JOPPA, Md. -- After 17 years working with the developmentally disabled, Sarah Ahmed's base salary is about $25,000, which is why she frequently works overtime. A widow with two boys, she arrives at Clayton House, a brick ranch home on two acres, at 4 p.m. and leaves at 8 a.m. the next day. While there, she takes care of three adults, all needing help with basic tasks such as putting on shoes. The eldest, 67 years old, is in a wheelchair. She bathes and dresses them, combs their hair and brushes their teeth. Sleeping with a baby monitor in her room, she gets up when they stir during the night. In the summer, they go to the park to feed the ducks and on week-long trips to the beach. The 16 hours at Clayton House leave her little time to be with her own sons, Akeem, 13, and Brandon, 11, which is harder on all of them since her husband died three years ago.
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In 2002, Ms. Ahmed received the Unsung Hero Award from her employer, the Arc Northern Chesapeake Region, a local chapter of a national nonprofit group that offers support to the developmentally disabled. The paper certificate sits framed in her bedroom, along with photos of her boys as toddlers, dressed in sailor suits. "To be honest, it's getting harder and harder," says the 48-year-old Ms. Ahmed. "It takes a toll on you after 17 years. I'm burning out." Over the years, lawmakers and courts have pledged that those with developmental disabilities should be free to live in communities, rather than institutions, and effectively left the task of fulfilling that pledge to people like Ms. Ahmed. Their efforts are paying off. Today, about 90% of the nation's 4.5 million developmentally disabled live in private homes, and many others live in small group homes, such as Clayton House. Eight states and the District of Columbia have closed every large, public institution for the developmentally disabled, moves lauded by advocates as not only more humane, but more cost-effective, too.
But obscured in the statistics are other figures that hint at a more fragile success. Faced with escalating demands and low pay, turnover among the more than 800,000 workers who provide direct care to the developmentally disabled averages 50% to 75% a year, according to Charlie Lakin, who heads a University of Minnesota program that tracks such services. Frequent turnover is especially difficult for the developmentally disabled, who often have the comprehension of a child and have, only through time, come to trust someone to care for them.
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Between 1992 and 2000, wages for "direct support" workers, who provide care to the developmentally disabled, increased 82 cents an hour. That compares to an average increase of $2.11 for fast-food workers, according to a study by consultants BDO Seidman LLP. The average starting wage for direct-support workers in the nonprofit private sector is $8.68 an hour. A 40-hour workweek at that rate yields an annual salary of $18,054, slightly below the $18,810 poverty level for a family of four.
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Moreover, about 700,000 people with developmental disabilities are now living at home with parents who are 60 years and older. Soon, they, too, will need help. The Bureau of Labor Statistics projects a 62% increase in demand for these kind of workers through 2010, more than twice the projected demand for nursing aides and fast-food workers. Those who work with the developmentally disabled inherited an unexpected legacy from a shift in thinking about care, says Timothy Quinn, executive director of the agency that employs Ms. Ahmed. Fresh out of college 30 years ago, he and other social workers were determined to get the developmentally disabled out of big institutions and into homes, with yards and their own rooms. "To sell it, we had to make sure we did it cheaper," Mr. Quinn says. At the time, he says, it was an effective strategy. But it inadvertently anchored the pay for all who followed. "They've never been able to make up what we gave away." The average annual cost for a person with disabilities to live in a home such as Clayton House is $67,000 a year, compared with $134,000 for a state-owned institution, according to the State of the States in Developmental Disabilities, a report compiled by the University of Colorado. Workers who care for the disabled in homes are, on average, paid 25% less than those who work in institutions, says Mr. Lakin, and don't receive the same benefits.
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Raising their pay is a politically charged issue. Wages and benefits already make up 60% to 70% of the budgets for agencies who provide services to help the disabled live in homes, the University of Colorado report says. Boosting them would require more Medicaid spending and likely force states to cut other programs or raise taxes. Legislation introduced to Congress in October would provide additional temporary funding to states to reimburse agencies for increasing wages. That bill is still pending.
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